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  • #46
    Congrats on your finals! Great news about AFP.
    Son Grant
    dx 12/21/16 at age 17

    BEP x3
    Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
    2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
    Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

    Comment


    • #47
      Hello again, good news, my AFP has already dropped to normal levels after only 2 rounds of BEP, so that's a pretty good sign, right?
      On the other hand, my LDH is now slightly elevated but my doc believes that likely happened because the amount of Accofil I was prescribed was a bit overkill (white blood count shot up to 38, reference being 4-10) so I was told not to worry about it.
      2016 Oct. 25: Noticed hard knot on right testicle
      2016 Nov. 7: Right IO. Pathology 100% seminoma, despite slightly elevated AFP, surveillance begins
      2017 Nov.: Recurrence: AFP 1091, HCG ~10, CT scan shows a 53x37mm lymph node
      2017 Dec. - 2018 March: AFP ~1600, 4xBEP, significant reduction in tumor size to 16x14mm, tumormarkers return to normal. During chemo, pathology is reevaluated, finds 98% seminoma, 2% embryonal carcinoma
      2018 August 6: L-RPLND, teratoma only, back to surveillance

      Comment


      • #48
        That LDH should not be a concern. While I was on Neupogen my LDH shot up to 2,313 and my WBCs were at 68.1.

        It's surely a reaction to the cellular turnover as your immune system is kicked into overdrive.

        - Matt
        March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
        March 13th: Left IO 100% Classic Seminoma
        6.3 x 5.1 x 3.8 cm, no invasion of anything
        LDH never fully normalized
        Stage: IS
        Watchful Waiting
        May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
        May 12th: started 3xBEP
        Neupogen during Cycle 2 and 3
        July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
        August 4th: Post Chemo CT/PET scan
        September 4th: Port removed
        July 10th 2018: 4 YEARS ALL CLEAR !

        Comment


        • #49
          I wouldn't be concerned with the LDH at all while on chemotherapy. It is very nonspecific and really is only best used for risk stratification before chemotherapy begins.

          Mike
          Oct. 2005 felt lump but waited over 7 months.
          06.15.06 "You have Cancer"
          06.26.06 Left I/O
          06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
          06.30.06 It's Official - Stage I Seminoma
          Surveillance...
          Founded the Testicular Cancer Society
          6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

          For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

          Comment


          • #50
            Hi Deliverator,

            I saw your thread and read through most of the posts. I'm sorry to hear about your relapse and commencement of chemo. I finished my 3XBEP in June, and let me tell you that chemo is awful; unfortunately, it was the only option. Like you, I have trouble with needles and I very rarely watch when my blood is drawn. I had a port put in prior to chemo and removed about 6 weeks after. I'm glad I used the port instead of being stuck with a needle every visit. I have a small scar on my chest because of it, but with all the anxiety, sickness, and sadness that comes with the ordeal; the last thing I wanted was to have multiple needles pushed in my arm every time I went for my infusion.

            Best of luck,
            ​Daniel_EYE

            Comment


            • #51
              Hi guys, I haven't posted an update in a while, mostly because not much has happened since my last. I finally finished chemo on March 1st and the only significant side effect I'm still dealing with is a low red blood cell count which makes me tired all the time and I run out of breath very quickly. Doctors gave some injections and pills for that so I should be good on that front soon as well.
              All my tumormarkers were in or very close to normal range after the 3rd round (AFP is 8, this hospital's reference value is <6). CT scan is going to be in about a month to see what remains of the tumor and to decide if I need surgery so I get to rest a bit finally.
              They also finished redoing the pathology and found 2% embryonal carcinoma, though the rest of it really is seminoma at least. Didn't increase my confidence in my previous hospital that's for sure.
              2016 Oct. 25: Noticed hard knot on right testicle
              2016 Nov. 7: Right IO. Pathology 100% seminoma, despite slightly elevated AFP, surveillance begins
              2017 Nov.: Recurrence: AFP 1091, HCG ~10, CT scan shows a 53x37mm lymph node
              2017 Dec. - 2018 March: AFP ~1600, 4xBEP, significant reduction in tumor size to 16x14mm, tumormarkers return to normal. During chemo, pathology is reevaluated, finds 98% seminoma, 2% embryonal carcinoma
              2018 August 6: L-RPLND, teratoma only, back to surveillance

              Comment


              • #52
                Glad you are finished! Your tumor markers being normal - great news! Hopefully, the CT Scan will confirm no evidence of enlarged nodes. Rest!!!
                Son Grant
                dx 12/21/16 at age 17

                BEP x3
                Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                Comment


                • #53
                  Oh yeah, I would get winded walking up half a flight of stairs right after chemo. your stamina will come back to normal in time!
                  6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                  6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                  7/7/15: bHCG 56, AFP 42, LDH 322
                  7/13/15 - 9/18/15: 4xEP
                  10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                  10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                  4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                  4/20/16: RPLND @ IU - teratoma only!
                  9/27/2018 all clears up to this date!

                  Comment


                  • #54
                    Deliverator and Daniel_Eye, good to hear you're done with chemo!! It takes a bit of time to bounce back, but you'll get there! Take it easy
                    July 2016 - Left I/O
                    December 2016 - BEPx3
                    All clear for 1 year!

                    My Testicular Cancer Support Kit
                    First Oncologist Visit Checklist
                    Simplify Cancer Podcast

                    Comment


                    • #55
                      Hello all, I've just got the results from my first post-chemo CT scan and it's good news! Lungs remain clear, and there is significant improvement in my lymph nodes. There was some confusion here before starting chemo, whether I had 1 or 2 nodes affected but only one remains visible at this point and it shrunk from 5.3 x 3.7 cm to 1.6 x 1.4. My tumormarkers have remained in normal range ever since the start of my last chemo cycle so roughly 2 months now. Based on all this and the fact that it's mostly a seminoma which is not normally operated on, my doctor thinks it's unnecessary to get surgery at this point even though my tumor is technically larger than the 1cm limit. I'm not really sure about this though, especially because my next official appointment is in early July and I feel like that's a lot of time without seeing a doctor. I'm probably going to go see them again this month to collect paperwork, should I ask for the surgery anyway? They made it sound like it's completely up to me and I just don't know.
                      2016 Oct. 25: Noticed hard knot on right testicle
                      2016 Nov. 7: Right IO. Pathology 100% seminoma, despite slightly elevated AFP, surveillance begins
                      2017 Nov.: Recurrence: AFP 1091, HCG ~10, CT scan shows a 53x37mm lymph node
                      2017 Dec. - 2018 March: AFP ~1600, 4xBEP, significant reduction in tumor size to 16x14mm, tumormarkers return to normal. During chemo, pathology is reevaluated, finds 98% seminoma, 2% embryonal carcinoma
                      2018 August 6: L-RPLND, teratoma only, back to surveillance

                      Comment


                      • #56
                        Good to hear on the AFP and tumor size reduction.

                        Given that your primary pathology was not pure seminoma and you had elevated AFP at both initial onset and at especially at recurrence, I think you probably need to go with the 1cm cutoff and be looking into an RPLND. But that is just a random internet guy's opinion. If you do receive the RPLND and it finds no active cancer, you can rest assured that you are highly likely to be over it all and future checkups will not be nearly as nerve racking.

                        Please get a second opinion at a well regarded institution near you to confirm treatment routes. This is a big decision that you should enlist in some expert help in making.
                        6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                        6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                        7/7/15: bHCG 56, AFP 42, LDH 322
                        7/13/15 - 9/18/15: 4xEP
                        10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                        10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                        4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                        4/20/16: RPLND @ IU - teratoma only!
                        9/27/2018 all clears up to this date!

                        Comment


                        • #57
                          Thought I'd give an update on my situation. I ended up asking my oncologist for an RPLND both for peace of mind and because every information I could find suggested that this would be the correct choice anyway. My oncologist personally and the board at the hospital reviewing my case recommended active surveillance but they agreed that RPLND is a good choice too. Apparently I was a perfect candidate for a laparoscopic RPLND due to the single involved lymph node, the fact that it's <3cm and that my tumormarkers remained normal post-chemo. Only two hospitals do laparoscopic RPLNDs in Hungary, though. It was left to me to decide between a Budapest hospital with a generally poor reputation with the other option being the University of Pecs which is a considerable distance from where I live. The decision was made easier upon learning the university hospital was the first to do this kind of surgery in Hungary so they have the most experience with it. I finally had the surgery on August 6th, it took roughly 6 hours I believe. I was discharged from the hospital on the 13th and they only kept me for that long because of travel distance. Only side effect I noticed is a tingling/burning/sore sensation and numbness on the inside of my right thigh which I hope is temporary because it's pretty annoying. Other than that I feel almost as well as before the surgery.
                          The only thing making me feel a little uneasy waiting for pathology is the amount of time between the end of chemo (early March) and surgery (August), although my tumormarkers were good on my July appointment.
                          Last edited by Deliverator; 08-16-18, 11:51 AM.
                          2016 Oct. 25: Noticed hard knot on right testicle
                          2016 Nov. 7: Right IO. Pathology 100% seminoma, despite slightly elevated AFP, surveillance begins
                          2017 Nov.: Recurrence: AFP 1091, HCG ~10, CT scan shows a 53x37mm lymph node
                          2017 Dec. - 2018 March: AFP ~1600, 4xBEP, significant reduction in tumor size to 16x14mm, tumormarkers return to normal. During chemo, pathology is reevaluated, finds 98% seminoma, 2% embryonal carcinoma
                          2018 August 6: L-RPLND, teratoma only, back to surveillance

                          Comment


                          • #58
                            Yeah, that amount of time is a while. Hopefully the pathology returns as dead tissue or teratoma. Let us know as soon as you hear!
                            6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                            6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                            7/7/15: bHCG 56, AFP 42, LDH 322
                            7/13/15 - 9/18/15: 4xEP
                            10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                            10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                            4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                            4/20/16: RPLND @ IU - teratoma only!
                            9/27/2018 all clears up to this date!

                            Comment


                            • #59
                              I got the pathology today, it's teratoma and necrosis only! Pretty happy right now.
                              2016 Oct. 25: Noticed hard knot on right testicle
                              2016 Nov. 7: Right IO. Pathology 100% seminoma, despite slightly elevated AFP, surveillance begins
                              2017 Nov.: Recurrence: AFP 1091, HCG ~10, CT scan shows a 53x37mm lymph node
                              2017 Dec. - 2018 March: AFP ~1600, 4xBEP, significant reduction in tumor size to 16x14mm, tumormarkers return to normal. During chemo, pathology is reevaluated, finds 98% seminoma, 2% embryonal carcinoma
                              2018 August 6: L-RPLND, teratoma only, back to surveillance

                              Comment


                              • #60
                                Awesome! on to surveillance!
                                6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                                6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                                7/7/15: bHCG 56, AFP 42, LDH 322
                                7/13/15 - 9/18/15: 4xEP
                                10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                                10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                                4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                                4/20/16: RPLND @ IU - teratoma only!
                                9/27/2018 all clears up to this date!

                                Comment

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