2nd recurrence seminoma seems likely

[BrendanF]

Hello, my account was one of the ones that was lost. In short:

2014 seminoma, elevated hcg, elevated testosterone, rt orchiectomy, 1x adjuvant carboplatin

Jan-May 2021 recurrent seminoma distant metastasis, hcg not elevated, elevated testosterone, 2x EP, 2x EC

March 2022 all clear, port removed

July 2022 suspect recurrence hilar and paratracheal nodes 3.5 x 2.3 cm, previously 1.4 x 1.1 cm (Feb 2022) hcg normal, testosterone elevated, biopsy scheduled

[Ryan Bi]

Hello, BrendanF,

I think you need a TC expert. I feel sometime recurrence more difficult to be treated. Do you contact Dr.Einhorn? It might be a good idea.

I hope the best for you!

Ryan’s mom

[BrendanF]

Thank you Ryan’s mom,

When I was first diagnosed last year I emailed Dr. Einhorn who referred me to Dr. Feldman at MSK who is managing my case. From what I’m seeing late recurrences after adjuvant carboplatin are more difficult cases. Seems it’s not used anymore.

[Mike]

You are definitely in great hands with Dr. Feldman. Have they decided a treatment plan yet?

Seminoma patients that relapse after carboplatin may be a bit more difficult to treat than chemo naive patients but also easier than that that fail first-line treatments. Regardless of the path, and yours is definitely more difficult, it is still very highly treatable overall.

Mike

[BrendanF]

Thank you Mike, doubtless I couldn’t ask for better than Dr. Feldman.

The pathology report is not back, the biopsy was only this morning, but when I’ve asked about this scenario in the past, the recommended treatment is TIP. One time last year when all of the complications and side effects of platinum were more fresh in memory radiation was mentioned rather than chemo.

I’m very hesitant to have more platinum. I have hearing loss, tinnitus, easily triggered hearing fatigue already. It’s been over a year and there has been no improvement with my hearing. And I’ve learned that it creates a situation where exposure to loud sounds (“loud” defined as > 80-85db if I recall) is more damaging than normal. I’m still managing to work competently as an audio engineer, but I don’t have high frequencies to spare.

My WBC count is still low. I had a pretty severe cellulitis infection after cycle 3 (EC) which stalled cycle 4 by weeks. The EP was punishing in other ways, severe nausea neuropathy (which thankfully has mostly resolved), At the end of the cycle I could barely hold down water this was with 2 doses of Emend during the week and staying on top of the Zofran. At the beginning of the EP and EC cycles my gut would clamp down like a vise, blood in mucus…

I know my constitution, I don’t think I would fare TIP well. The ototoxicity is cumulative. I’m not willing to lose more hearing and also what remains of my career (wrecked by covid “vaccine” mandates), more bone marrow damage, renal damage, etc. for a possible 5 year cure and then face the risk of secondary cancers—at that point I would have had nine cycles of platinum.

I have a lot to think about

[BrendanF]

The biopsy is positive for seminoma.

Regarding 1st line treatment, my post 1st line treatment PET did show some mild uptake in thoracic nodes. I don’t know whether this technically is categorized as cure or fail. But it seems noteworthy given that is where the recurrence is happening.

[BrendanF]

From this 2021 ASCO presentation by Dr Noah Richardson Indiana University School of Medicine, late relapse of seminoma with prior chemo exposure gives a 2 year progression free survival rate of 33%. But this number seems to lump together those treated with resection, chemo and both resection and chemo. The chemo only group is much lower 2 yr PFS (10%), but that number seems to be for seminoma and non-seminoma lumped together

https://www.urotoday.com/conference-highlights/asco-2021/asco-2021-testicular-and-penile-cancer/130135-asco-2021-late-relapse-of-germ-cell-tumors-detection-and-treatment-outcomes.amp.html

[Mike]

From this 2021 ASCO presentation by Dr Noah Richardson Indiana University School of Medicine, late relapse of seminoma with prior chemo exposure gives a 2 year progression free survival rate of 33%. But this number seems to lump together those treated with resection, chemo and both resection and chemo. The chemo only group is much lower 2 yr PFS (10%), but that number seems to be for seminoma and non-seminoma lumped together

https://www.urotoday.com/conference-...comes.amp.html

Have you met with Dr. Feldman yet?

One, I am not sure you are considered a late relapse as you have relapsed within 2 years of receiving first line therapy right? You ended chemo in May 2021? Late-relapses are e bit different biologically so I am not sure I would easily lump myself into this category.

Two, the 2-year overall survival for seminoma patients previously treated with chemotherapy is 100% so I would not let that progression-free survival frighten you.

Mike

[BrendanF]

Thank you Mike, I’m trying to understand this and certainly may be falling short of that. I have an appt with Dr. Feldman this afternoon.

By late relapse I’m referring to the > 6 year span between my initial stage 1 case with 1x adjuvant carboplatin in 2014 and the 1st recurrence in Dec. 2020.

[BrendanF]

So TIP is the recommended treatment and ‘standard of care.’ 4 more cycles of cisplatin would certainly cause further hearing loss among other things.

It looks unlikely that I would qualify for any immunotherapy trial until I’ve undergone TIP first. Iow, I would have to damage my hearing with TIP to qualify for a treatment that could spare my hearing, which is experimental of course and of unproven efficacy and unknown adverse effects. Yes, I understand that trials have objectives differing from mine.

I’m told that there would be a 60-70% cure rate with TIP given my situation. This sounds somewhat promising, but I was told in 2014 that adjuvant carboplatin was 97-98% curative. In 2021 I was told that 4xEP would be 85-90% curative. When I switched to 2xEP 2xEC I was told that the cure rate would be (estimating due to less data) 75-80%. I’m somehow defying the odds.

I’ve consented to genetic testing of the tumor and myself and should have results in a month. Hopefully this will show if this tumor is resistant to platinum and if there are other treatment options. I have a consult with a radiation specialist in 2 weeks but that doesn’t seem like a curative option.

[Mike]

Thank you Mike, I’m trying to understand this and certainly may be falling short of that. I have an appt with Dr. Feldman this afternoon.

By late relapse I’m referring to the > 6 year span between my initial stage 1 case with 1x adjuvant carboplatin in 2014 and the 1st recurrence in Dec. 2020.

I don't think relapsing after adjuvant therapy is considered a late relapse so I was looking at the time since finishing treatment in 2021. Glad that you had an appointment with Dr. Feldman and that TIP is the way to go. Glad to hear that you did their Make An Impact program for the molecular analysis as well.

Mike

[Mike]

Thank you Mike, I’m trying to understand this and certainly may be falling short of that. I have an appt with Dr. Feldman this afternoon.

By late relapse I’m referring to the > 6 year span between my initial stage 1 case with 1x adjuvant carboplatin in 2014 and the 1st recurrence in Dec. 2020.

I don't think relapsing after adjuvant therapy is considered a late relapse so I was looking at the time since finishing treatment in 2021. Glad that you had an appointment with Dr. Feldman and that TIP is the way to go. Glad to hear that you did their Make An Impact program for the molecular analysis as well.

Mike

[BrendanF]

After further consideration and a consult with Dr. Rimner and correspondence between Drs Feldman and Rimner I’ve decided to forego TIP and have radiation. I start a 3 week (15 day) treatment schedule tomorrow.

[BrendanF]

As an aside, though HCG was elevated in only one of the 3 occurrences, in 3 of 3 occurrences I’ve had seminoma, each time my testosterone was elevated. In each occurrence the elevation in testosterone was proportionate to the tumor/metastasis. It was because of a routine testosterone test that the most recent occurrence was caught in July instead of Sept when the routine surveillance CT scan was scheduled which is fortunate as this appears to be an aggressive seminoma. Some nodes increased ~ 40% and there was new metastasis to the right subclavicular within the 6 weeks between the July CT scan and late August PET scan

[Mike]

I am glad to hear that there is a plan that has formed between the doctors. Interesting about the testosterone levels too. All the best with radiation.

Mike