Small Cell Experience…

[LF27]

Hope you’re all enjoying your Saturday.

Been 11 months since last Lupron shot. Vacation feels great, however, tissue from recent TURP showed small cell cancer. Here’s a summary of past couple of years, and some notes from Dana Farber visit yesterday:

2-2018 local and low vol nodal recurrence.

7-2018 Lupron started (PSA 12.5)

11-2-18 2nd shot given, PSA 0.78

2-15-19 PSA 0.67, 3rd lupron (last on intermittent program)

8-2-19 PSA 0.81, testo normal.

12-2019 admission for urinary obstruction, TURP c/w poorly differentiated/small cell cancer.

2-7-20 PSA 0.91, CT with bulky nodal disease and small lung nodules

1) New diagnosis of small cell cancer - likely from the prostate (small nodules in the lung)

2) Staging - bulky nodal disease

3) Treatment - chemo

4) BWH pathology review is pending and I'd like to see this report before choosing chemo but chemo will likely be cisplatin/etoposide/atezo which is the standard small cell lung cancer regimen (NEJM)

We’re expecting the pathology review information to be available on Monday, at which time they’ll finalize details of the chemo and we’ll discuss and finalize the plan. At this point, the expectation is to start chemo next week.

I’m pleased to be in the care of Dana Farber. They’re happy to facilitate a 2nd opinion, and encourage that if I pursue one, that it be obtained from a qualified, experienced source, such as Sloan Kettering, etc.

I asked whether such an opinion would be likely to recommend an alternative to chemo, and understood the response to be no.

I’m generally aware of the typically poor prognosis of small cell, however, heartened by some of the experiences I’ve seen described by some of you here.

Thought I’d reach out to see what comes back as my better half and I spend the weekend marinating over the decision.

Thanks in advance for any input. Leo

[tango65]

You should request a study of the genome of the cancer (somatic genome). The cancer could have mutations which could be treated with specific drugs such as Olaparib , Keytruda or similars. The chemo is the next step. There are some clinical trials which are recruiting:

clinicaltrials.gov/ct2/resu...

Best of luck!!

[Tall_Allen]

You have the foremost researcher of this, Misha Beltran, right there at Dana Farber. Not sure you can do better anywhere.

[Hidden in reply to Tall_Allen]

Tall allen. We learned today that my husband's sacral nerve tumor is small cell. He was 1st diagnosed with adenoca. In 2003. Radical prostactomy. Then had radiation in 2006. Spa rise in 2017. Lupron/Casodex dropped pda to nondetectable. Started having severe perineal pain in Aug. MRI showed lesion on S3 nerve. Biopsy last week..small cell cancer, a variant of prostate cancer. Might not be correct term Dr.Aurora used. We are at Siteman Cancer Center Wash U.St. Louis. Very overwhelming with dismal prognosis. He spent 45 min. With us discussing everything. Tissue sent to lab in Chicago for genome testing. Aurora is from Sloan Kettering. Says he has not seen 1 such cancer here. Saw 3 at SK. Recommended.Bertran at DF for 2nd opinion. Or gave me 2 names Sanderson. Husband in excruciating pain. To start radiation To 3 cm. Soft tissue mass for paliation. This explains why his psa is still 0.1 CT chest negative. CT abdomen negative. Getting MRI brain next Friday.

[tom67inMA]

I'm about to start the exact same chemo combo on Monday. The addition of immunotherapy was only approved last year, and though it doesn't work for everybody, when it does work the results can be impressive. I'll also be getting genetic testing, and if my tumors don't shrink fast enough they may add radiation to help things along, and probably in the hopes of reducing my urinary symptoms faster.

[LF27 in reply to tom67inMA]

Thanks Tom, and good luck tomorrow! Hope for a great outcome for you, relief from various symptoms you’ve been experiencing (just read your recent posts) and better days ahead.

[dasyluo]

how are you doing now with the treatment?

[LF27 in reply to dasyluo]

After 2 of 6 scheduled cycles, a CT scan has shown interval improvement compared to the scan taken before starting chemo. Will scan again after 6th cycle to determine overall impact of the treatment.

Best of luck as you move forward with your journey.