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Recurrent seminoma

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  • #16
    Thank you Mike and raincrow!

    It's almost May now and I haven't completed chemotherapy. The third cycle of EC went much easier than the previous two cycles of EP--much less nausea. I was able to eat full meals all week and into the following week. The care at MSK is excellent. But, on the Monday of the second week off, I noticed a sore red spot on my leg which rapidly turned into a large cellulitis infection that was resistant to antibiotics. It took 8 days of IV antibiotics in the hospital to heal. This delayed the 4th cycle by 2 weeks which I'm now scheduled to starti next Monday. I have to make a decision to either be admitted for EP in the hospital (due to the previous complications) or continue with the EC which lowered my immunity more than the EP, hence the cellulitis.

    In the meantime, the neuropathy I had has decreased significantly to where I'd say it's not an issue. But the issues with hearing have not improved. I've done some relatively scientific testing of my hearing myself and I seem to have hearing loss above 10k which is a problem, not only in general but specifically because of my work as an audio engineer. I'm wondering if I should even continue with the platinum drugs. I've been reading papers about prophylactic treatments that can reduce platinum ototoxicity. No one has suggested this thus far. It seems experimental.

    If I could, I'd take the neuropathy back if my hearing could be spared without a second thought. This really kinda caught me by surprise. I had heard and read a lot about tinnitus but not so much about hearing loss until I dug more. What I'm finding is that the data is not great on this topic. The testing seems to be limited, (eg. only concerned with the speech range) and not standardized (eg. varying frequency ranges tested). None of the papers I've read mention frequencies above 12k and only one went that high. I suspect that many people suffer hearing loss associated with platinol and don't notice it because it's occurred above the range of speech. Another concern is that some papers show delayed onset of hearing loss. A lot to think about ...
    6-17-2014 - ultrasound: right testis neoplasm likely 6-20-2014 - HCG 43 mIU/mL 6-25-2014 - right radical orchiectomy 6-27-2014 - pathology: 3.6 x 3 x 2.3 cm seminoma, classic type.- pT2, pNX, pMX 8-15-2014 - 1x carboplatin 12-22-2020 - enlarged left supraclavicular node. Large abdominal mass noted during GP examination 12-24-2020 - HCG normal 12-28-2020 - CT: large right side retroperitoneal mass, small cyst lower pole of left kidney, 2.3 cm left supraclavicular cystic lesion 1-13-2021 - biopsy 2 left supraclavicular nodes 1-15-2021 - pathology: metastatic seminoma 1-21-2021 - PET: findings consistent with metastatic disease left clavicular 7mm, posterior mediastinum 1.8cm, right adrenal node 1.6cm, aortocaval node 5 x 5cm 2-8-2021 started 4xEP 3-29-2021 switched to 2xEC after 2xEP

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    • #17
      My 4th cycle (EC) was the 1st week of May. It went pretty easily wrt nausea. The cellulitis infection came back in the same area of my leg, but this time it was treated outpatient and kept under control with the antibiotic that the original infection finally responded to. I went back to work only 3 weeks later, which may not have been the best decision due to stress, but by that time I really wanted to be active again.

      I still have the hearing loss and tinnitus but I’m managing ok at work so far. Aside from occasional episodes, the neuropathy has mostly resolved.

      I’ve since had a PET which was clear except for “Near complete resolution of FDG-avid hilar adenopathy. Residual mild FDG uptake of the left hilar node,
      2.4, before SUV 3.4.

      A subsequent chest x-ray was clear. My WBC and platelets are still low but other bloodwork is good. So I’m on surveillance now. Next CT is the 3rd week of Sept.

      I have a lot to be grateful for: this forum, Dr. Feldman for taking my case, Dr Einhorn for referring me to him, friends and family giving rides to treatment and financial assistance, my neighbor for mowing my lawn many times, people who offered me work when I was ready to come back, prayers from too many people to list…
      6-17-2014 - ultrasound: right testis neoplasm likely 6-20-2014 - HCG 43 mIU/mL 6-25-2014 - right radical orchiectomy 6-27-2014 - pathology: 3.6 x 3 x 2.3 cm seminoma, classic type.- pT2, pNX, pMX 8-15-2014 - 1x carboplatin 12-22-2020 - enlarged left supraclavicular node. Large abdominal mass noted during GP examination 12-24-2020 - HCG normal 12-28-2020 - CT: large right side retroperitoneal mass, small cyst lower pole of left kidney, 2.3 cm left supraclavicular cystic lesion 1-13-2021 - biopsy 2 left supraclavicular nodes 1-15-2021 - pathology: metastatic seminoma 1-21-2021 - PET: findings consistent with metastatic disease left clavicular 7mm, posterior mediastinum 1.8cm, right adrenal node 1.6cm, aortocaval node 5 x 5cm 2-8-2021 started 4xEP 3-29-2021 switched to 2xEC after 2xEP

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      • #18
        Good to hear the clear scans! Please keep us posted after future checks.
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

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        • #19
          Thank you Davepet, I will
          6-17-2014 - ultrasound: right testis neoplasm likely 6-20-2014 - HCG 43 mIU/mL 6-25-2014 - right radical orchiectomy 6-27-2014 - pathology: 3.6 x 3 x 2.3 cm seminoma, classic type.- pT2, pNX, pMX 8-15-2014 - 1x carboplatin 12-22-2020 - enlarged left supraclavicular node. Large abdominal mass noted during GP examination 12-24-2020 - HCG normal 12-28-2020 - CT: large right side retroperitoneal mass, small cyst lower pole of left kidney, 2.3 cm left supraclavicular cystic lesion 1-13-2021 - biopsy 2 left supraclavicular nodes 1-15-2021 - pathology: metastatic seminoma 1-21-2021 - PET: findings consistent with metastatic disease left clavicular 7mm, posterior mediastinum 1.8cm, right adrenal node 1.6cm, aortocaval node 5 x 5cm 2-8-2021 started 4xEP 3-29-2021 switched to 2xEC after 2xEP

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          • #20
            My next CT scan is scheduled a week and 1/2 from now, but I have 2 hard marble sized lumps that are fixed in place, one in my left underarm and another superficial in my abdomen on the left side. Fwiw, the tip off in Dec 2020 was a left supraclavicular node.

            Kinda concerned. I haven’t had HCG as a diagnostic tool with the recurrent seminoma this year. If a lump is palpable and/or shows up in imaging, is a biopsy next in a case like this?
            6-17-2014 - ultrasound: right testis neoplasm likely 6-20-2014 - HCG 43 mIU/mL 6-25-2014 - right radical orchiectomy 6-27-2014 - pathology: 3.6 x 3 x 2.3 cm seminoma, classic type.- pT2, pNX, pMX 8-15-2014 - 1x carboplatin 12-22-2020 - enlarged left supraclavicular node. Large abdominal mass noted during GP examination 12-24-2020 - HCG normal 12-28-2020 - CT: large right side retroperitoneal mass, small cyst lower pole of left kidney, 2.3 cm left supraclavicular cystic lesion 1-13-2021 - biopsy 2 left supraclavicular nodes 1-15-2021 - pathology: metastatic seminoma 1-21-2021 - PET: findings consistent with metastatic disease left clavicular 7mm, posterior mediastinum 1.8cm, right adrenal node 1.6cm, aortocaval node 5 x 5cm 2-8-2021 started 4xEP 3-29-2021 switched to 2xEC after 2xEP

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