Quick Update

[tom67inMA]

I'm finally getting back to writing draft blog posts, but don't have anything ready to share at the moment. In the interim, I thought a few highlights of news about my journey since that awful scan in mid December were in order.

Firstly, my genetic tests came back, and there's no actionable mutations. Oddly, for such an aggressive cancer, it actually has a low mutational burden which explains why the atezolizumab didn't work. As I understand it, my cancer isn't different enough from my healthy tissue for my immune system to care. This actually took a few options off the table which is disappointing but at least time won't be wasted pursuing low probability treatments.

I met with Dr. Beltran, and while there are a few studies I could get into, they are phase 1 studies and not really great options compared to trying a different chemo. So I opted to try folfiri, which was originally suggested by my regular oncologist, Dr. Ernst in Natick MA. I'm going to give the guy some publicity here. He used to work at Dana Farber doing research, and the easiest way to describe him is that he very much like Dr. Beltran but a few decades further into his career. He's no dummy, and the fact that he can make me and my wife laugh while delivering bad news about my latest scan is priceless. We're not talking fall out of your chair funny, but a few giggles to ease the tension of what otherwise is a very uncomfortable situation.

So far folfiri seems to be working. I'm feeling better and my blood counts and liver enzymes reversed course and are now heading in a direction more compatible with continued life. I get my next infusion tomorrow.

In the longer term, I plan to get back in touch with Dr. Beltran and get more details about some studies that are opening up this spring including the DLL3 study that Tall Allen is so optimistic about. This is driven by a strong desire to have a non-chemo option to give my bone marrow a rest.

I'm quite surprised at my will to live. In mid December I felt so awful on cabazitaxel that I was ready to pack it in and focus on making myself comfortable. Then I realized that getting the cancer out of my liver would make me comfortable and the rest is history.

Happy New Year to my fellow warriors and may we all have great responses to treatment in 2021.

[Hidden]

Keep up the good fight and great attitude, I should have been dead four years ago.

[tom67inMA in reply to Hidden]

Can you elaborate a bit on "should have been dead four years ago"? A recent post put a question in my head: How far gone can somebody be and still make a comeback? I do sometimes wonder if I'm blowing things out of proportion or not, but can point to several cases here on this forum which were very similar to mine until there was a divergence of sorts. I was able to continue with treatment, while another member was not for one reason or another. I'm still here, alive and fighting, they've shuffled off their mortal coil. It does make me wonder "why me?" (in a good way, I suppose). Anyhow, thanks for at least listening to this rambling reply. Events of the past month have left my brain a bit scrambled.

[MateoBeach in reply to tom67inMA]

You are not done here yet. There is more for you to do, to learn and to give. So stick around and get to it. 💪💪🌟🌟🙏🏻

[LearnAll]

Thanks Tom for regular updates. These might help others who have Neuroendo variant.Know that you are posterboy of how a man can keep his fight going in spite of many curve balls thrown at him by PCa. Wish you a very healthy 2021 and lots of "hampster power" this year.

[tom67inMA in reply to LearnAll]

Thanks for your continuing support! Honestly, I was really hoping for the DenDoc experience where carbo+etoposide produced a multi-year response to treatment. I think he may be the longest surviving neuroendocrine member that I'm aware of.

[Tall_Allen]

The "iri" in folfiri stands for irinotican - there were a couple of case studies in Japan where it was very effective (combined with a platin):pubmed.ncbi.nlm.nih.gov/245...

pubmed.ncbi.nlm.nih.gov/253...

Sometimes NEPC expresses a lot of PD-L1 - I guess yours doesn't. Sometimes BRCA mutations occur in those tumors, which may be actionable - again, apparently not in your case.

I think IHC analysis is more useful than genomic analysis for NEPC. Expression of DLL3, somatostatin, N-MYC may sometimes be actionable.

[tom67inMA in reply to Tall_Allen]

I have reason to believe irinotican might be very effective for me. I need to double check my facts, but irinotican works in part by causing DNA strand breaks. I looked up some of the genetic defects in my cancer, and apparently one of the genes for repair of DNA breaks is defective, so if I understand correctly, my cancer has limited ability to fix the damage caused by chemo, while my healthy cells don't have that limitation.

As for genetic repair, my mismatch repair genes are all in working order and no BRCA1 or other useful defect.

[Fanger1]

Happy New Year Tom,Congratulations on getting treatment that works! Hope you continue to get your numbers and energy back this year!

[hansjd]

Tom, as always, we admire your fortitude and are delighted to hear your newest treatment is working. That is such good news. May you continue your journey with successes. We are all with you.

[GoBucks]

Thanks for the update Tom. Wishing you continued laughter in 2021 and continued good response to all treatments. Looking forward to new blogposts.

[dockam]

Hey Brother, so happy to hear that you didn't say "F this" in December. We love your blogs of your Journey(Camino).

We are all on our own way(path) and we all have turmoils along the way

As I read you post I thought of this:

" He achieved success who has lived well, laughed often, and loved much;

Who has enjoyed the trust of pure women, the respect of intelligent men and the love of little children;

Who has filled his niche and accomplished his task;

Who has never lacked appreciation of Earth's beauty or failed to express it;

Who has left the world better than he found it,

Whether an improved poppy, a perfect poem, or a rescued soul;

Who has always looked for the best in others and given them the best he had;

Whose life was an inspiration;

Whose memory a benediction."

Bessie Anderson Stanley 1904

And my son(English Major), home for Christmas break from the UK had me read this:

"Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.

Good men, the last wave by, crying how bright

Their frail deeds might have danced in a green bay,

Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,

And learn, too late, they grieved it on its way,

Do not go gentle into that good night.

Grave men, near death, who see with blinding sight

Blind eyes could blaze like meteors and be gay,

Rage, rage against the dying of the light.

And you, my father, there on the sad height,

Curse, bless, me now with your fierce tears, I pray.

Do not go gentle into that good night.

Rage, rage against the dying of the light"

Dylan Thomas 1953

Let us all rage against the dying of the light and not go gentle into that good night (Death)

Fight On Brothers

Randy

[tom67inMA in reply to dockam]

Thanks for the poetic support. Two responses come to mind:

First, I closely followed the journey of Alex Trebek. In July of 2020 he was interviewed and said his current treatment was working well, but when that failed he wouldn't pursue any further treatment. In late October he filmed his final episode of Jeopardy, and was reported to be in obvious pain afterwards. He died in late November(?), having spent his last days at home with his wife, reportedly pain free and with his mental faculties intact, sitting on his favorite swing in his yard and appreciating the view. If this is all true, he lived well to the very end and died a very dignified and comfortable death.

dailymail.co.uk/news/articl...

Secondly, I'm finding it difficult to be mentally strong every day of my cancer life. What seems to work extremely well for me is to be strong only at those moments that require strength. For example when treatment decisions need to be made. Or today, which is chemo infusion day, which is the one day every two weeks in which I will explicitly rage against the dying of the light. The other 13 days I can cower like a scared child (though I prefer not to) as long as I can muster up my fighting attitude on infusion days.

BTW, yesterday I walked a mile, which is the first thing I've done that resembles endurance exercise in a month. It's a great sign that things are heading in the right direction now.

[treedown in reply to dockam]

Thanks Randy, good choice.

[ctflatlander]

Best wishes on your new treatment.

[j-o-h-n]

"I'm finally getting back to writing draft blog posts, but don't have anything ready to share at the moment. "

AW SHIT!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/04/2021 3:55 PM EST

[treedown]

That's all great news! So happy for you! Seems malecare is a roller coaster of emotions today.

[Gunnershome]

Hi Tom, I am so glad to hear you are continuing to fight and you have found another option of treatment. You are an inspiration to us all. My husband also has NE PC. Can I ask what your latest liver numbers are ? ALT, AST, Alk Phos, Bilirubin? My husband's NE is spiraling and I would like to look into this option possibly for him. Is folfiri and oral medication or monthly infusion? Keep charging along and continue to keep us updated. I am so thankful for this HealthUnlocked Community!

[tom67inMA in reply to Gunnershome]

Folfiri is a cocktail of three drugs given via infusion every 2 weeks, and it's quite complicated. The first two drugs are given via a 90 minute infusion, but they had them in separate bags hooked to two different chemo pumps both pumping into my chemo port simultaneously. The third drug is given partly as an initial "push" (they connect a syringe to the IV line and push the initial dose in), and then they connect a portable pump that I take home with me that gives me the rest of the dose over then next 46 hours. It's got a very short plasma half life, so the pump maintains an effective dose for two days, then back to the office to get the pump removed and the port flushed.

My doctors tell me there are many off-label options left to be tried if needed. When I was in Dr. Beltran's office she noticed a new small cell lung cancer drug had just been approved which she would consider, but it sounded approximately as effective as folfiri so we stuck with that.

Here are my numbers for 12/21/20 (first folfiri infusion) and 1/4/21 (second folfiri)

ALP 487 -> 304

ALT 133 -> 55

AST 216 -> 92

Billirubin 0.6 -> 0.3

GFR 61 -> 90

WBC 9.9 -> 3.9 (no longer on Neulasta, so not unexpected)

Hgb 9.1 -> 9.7

Platelets 64 -> 180

A very nice trend (excepting WBC, as expected) for all the important numbers used to determine if it's safe to continue treatment. I physically feel a lot better, and the stress of seeing these numbers suddenly going bad for most of December is gone. Also, at the first follow-up appointment my oncologist took one look at me and said "this one's working", just based on my appearance and behavior.

The plan is to test tumor markers (Chromogranin-A and LDH, possibly PSA) in 2 weeks. My cancer is a bit odd, the tumor markers stay "normal" until the cancer is well and truly out of control, and then the tumor markers explode. When they were last checked in early December my Choromgranin-A was up 20-fold over the previous value)

[Gunnershome in reply to tom67inMA]

Thanks for all the info. My husbands liver numbers are much higher. We are trying hard to get them back under control.

The chemo cocktail sounds impressive. The main thing is....you look and feel better and your numbers confirm which is great news! I’m very happy for you!! Keep going!!! We are cheering you on!!!

[Doseydoe]

Gday Tom, good to read your latest update, you put together a nice turn of phrase. I hope you and yours have a prosperous 2021, cheers 🥂 🎊🎊🎊 DD.