2nd recurrence seminoma seems likely

[BrendanF]

Testosterone is back to the level expected when seminoma is not in the picture. It had been elevated since last summer and was what caused suspicion of the latest recurrence.

[Mike]

I am not sure that a relapse after adjuvant carboplatin therapy would be considered a late relapse vs. after having received full-dose BEPx3/EPx4. The carboplatin does seem to push the relapse window further down the time line than vs. just active surveillance. But, I think that patients receiving carboplatin adjuvant therapy would be considered chemo naive.

If there is a late relapse, surgery upfront vs chemo upfront dies seem to be preferred, if possible.

Mike

[BrendanF]

I had another CT scan this week. There are a couple unchanged nodes hilar and precaval ~ 1-1.6 cm and some ‘evolving’ effects of radiation to the lungs. Esophagitis remains the same. So far so good.

[Maris]

Thanks for update Brendan, obviously it wasn't easy treatment but it is good to know that it is worth it. Best wishes with next chekups!

[Mike]

Thanks for the update and glad to hear that things are improving since that last treatment. Treatments are definitely not easy, but definitely worth it, once they are over.

Cheers to a great check up in June and looking forward to more updates.

Mike

[BrendanF]

Thank you Mike, SamanthaS and Maris. Sorry for the silence. I had the radiation treatments in the esophagus and right subclavicular area in the first half of October '22. I was going in early in the morning and working afterwards many of the days. I don't recall exactly how many treatments it was, I think I stopped at the 13th treatment which was on a Fri. Up until that point the effects were very minor, some fatigue and minor pain in the esophagus when eating. But the night after the lasr treatment the esophagitis hit. Terrible pain. I wasn't able to eat anything except scrambled eggs with a lot of difficulty and pain. I was admitted to the hospital for a 5 days and out of work for a while, lost weight. Since then I've had 2 CT scans and the next one is scheduled for early June. It looks good so far, although there has been some radiation effects to the lungs, and the esophagitis remains. It's nothing like what it was immediately post-treatment. I eat normally and occasionally have some mild difficulty swallowing certain foods.

Hopefully this turns out to be a valid alternative to TIP in the long term. It's hard to say, though I've preserved what I have of my hearing and career by going this route which was a major concern.

[Maris]

I'm following your story since 2021 cause my hb was on chemo at the same time. Please post any update, we are rooting for you! Wishing you a best luck!

[SamanthaS]

I have followed this thread, Brendan, and wishing you best of luck. Please post any update here. We are rooting for you!

[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

[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

[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.

[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]

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.

[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.