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New member 24 yo son with Mediastinal Nonseminomatous Germ Cell tumor

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  • New member 24 yo son with Mediastinal Nonseminomatous Germ Cell tumor

    Hi everyone! I've read a lot of your stories and it's time for me to join your group. My 24 yo son was dx with a mediastinal nonseminomatous germ cell tumor in June 2017. No symptoms and really an incredible route to diagnosis. His fiance was practicing giving stress tests for her Masters and his showed PVCs so they went to a cardiologist. Several doctors later (and no cardiac problems) we were referred to a surgeon for an incidental finding of a lesion in the chest. I remember thinking "they're getting married in September and now he'll need surgery"! Man I wish that had been the case. Instead, he had a biopsy followed by a PET scan to check for mets (none found). Finally referred to Fox Chase where he's being treated by Dr. Geynisman. Negative brain MRI and testicle US. He had 2 rounds of BEP and had good tumor marker response. AFP was 318 at diagnosis, dropped to 90 after Round 1, dropped to 50 after round 2. But he developed shortness of breath and reduced pulmonary function so they switched him to VIP, in patient. He did miss 1 week of treatment while they decided whether or not to switch regimens. His AFP only dropped to 30 after his 3rd round (1st of VIP) and we won't know his 4th round number until 10/2/17 when we go for his second look CT scan. His HCG has always been normal and he showed his first ever LDH number last round but the doctor attributed that to tumor death. His doctor is not happy with his last AFP reading. So now we wait a few weeks to see what the next step is. He finished his last round on 9/16/17 and he's still incredibly tired. I'm hoping that means the chemo is KILLING that freaking tumor!

    Thank you for indulging this long post. This mama needs a little therapy of her own and I'm grateful for the venue. Any advice or guidance is most appreciated.

  • #2
    How large was his tumor? Did you hear what the specific type of nonseminoma or mix it was?
    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!
    3/29/2018 all clears up to this date!

    Comment


    • #3
      I don't have specifics but it was 66% cyst like and a yolk sac tumor, about 6 cm x 12 cm I believe. The PET said it was bigger but the doctor said the CT is more accurate. Does that make sense?

      Comment


      • #4
        Guest replied

        Today, 12:36 PM
        Hello MamaAng - I'm another mom here who joined in June. I have found this forum my life line. Special shout out to one member mcintoda who has been incredible reaching out to me with advise and information. This forum gives me so much! I'm hope it helps you also.


        06/17 diagnosed TC
        7/19/17 Left I/O (still working on getting exact breakdown of tumor from son) 2A nonseminoma. 1 lymph node just under 2cm
        markers rising (still working on getting numbers from son)
        09/25/17 start 3xBEP


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        • #5
          So sorry to hear about your son. Mediastinal nonseminomatous present differnt challenges it seems than tumors orginated in the testicles, at least from what I have seen while on the boards here. I would email Dr. Einhorn if you have not yet, just to make certain what next step should be. Keeping you both in my thoughts.
          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.
          Grant is enjoying his senior year in High School Cancer Free!

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          • #6
            Update: I emailed Dr. Einhorn tonight with our story. Will let you know what he says.

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            • #7
              Dr. Einhorn's response (at 10 pm last night!!) :

              These are many questions. Basically, almost all patients need resection 4-6 weeks after 4 th and final course of chemo, unless his follow- up CT normalizes, which would be extremely rare. There is no immediate concern with lower drop in AFP. Should his AFP rise, would probably still recommend surgery in,was there was known disease elsewhere. However that would mean persistent yolk sac tumor. Our surgeon here, Ken Kesler is the world's expert in these types of surgery. Fox Chase is excellent but I do not know surgeons in the Philly area. This is not a hereditary disease.

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              • #8
                hi MamaAng,

                I think it is also possible that the AFP decreased more slowly last time because of potential teratoma elements (common with yolk sac - I had teratoma + yolk sac too, testicular). You will see when the tumor is taken out after chemo. It would not be necessarily a bad news.. .. as you know, teratoma is not responsive to chemo but if it can be taken out it is not the worst (mature T. is less aggressive than immature if i remember well).

                It is VERY fortunate that you seem to have found it on time...no mets... (and my AFP was 3K!)

                all the best!!
                sanis

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                • #9
                  Thank you Sanis! I appreciate the feedback and any information or advice you're willing to share! Thanks for reaching out!

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                  • #10
                    No problem. I wish I did not know any of this. Please keep us posted raise any question you have. The main point is that Einhorn is probably almost always right and you should not worry about the smaller drop in AFP for now.

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                    • #11
                      At 6cm x 12cm originally, I would be following Dr. Einhorn's advice on mentally preparing and making arrangements for surgical resection of the residual mass at a center of expertise such as IU. This will certainly give you the best chance of beating it for good. Traveling to be in the best care is definitely worth it in this type of situation.
                      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!
                      3/29/2018 all clears up to this date!

                      Comment


                      • #12
                        Glad you reached out to Dr. E- he is the best!!!!
                        I second BIWI's suggestion. My son had his post chemo RPLND in our small town, with a good DR. however the post surgery care was not good (nothing to do with the surgeon). With post chemo RPLND you definitely want a TC Center of Excellence- doctors who have preformed the surgery monthly, versus 1-2 a year. Same with hospital staff- nurses who are familiar with post-op care.
                        Keep us updated.
                        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.
                        Grant is enjoying his senior year in High School Cancer Free!

                        Comment


                        • #13
                          Thanks for the input. I totally agree and I'm trying to gently guide them towards going to Dr. Einhorn's surgical recommendation.

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                          • #14
                            Hi there! I'm sorry to see you here, but it is a good place to get support and advice for sure. I agree with biwi and trekga in regards to the surgery. It is probably a good idea to consider having it and where to have it with a lot of thought.
                            9/28/16 - Diagnosed Stage 3C. 10/10/16 - Left I/O. Pathology pure seminoma but treated as non-seminoma due to aggression and high AFP at 58. Largest tumor at 11x9cm. 10/28/16 - Emergency VIP chemo in hospital and 3 additional in-patient cycles. 2/17 - RPLND and tumor masses all dead. 3/17 Remission and surveillance. 7/17 - First imaging clear.

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                            • #15
                              Sorry you're going through this, if even on the sidelines. I had a similar experience to your son's. Having a specialist on this, even if it's just in an advisory role with your son's primary oncologist, can be invaluable. I too was advised to consider getting the resection done at IU. Me and my oncologist were getting advice from Dr. Nichols. I ended up getting my resection done locally after we'd determined the surgeon availed to me was more than capable.

                              Everything I've read, granted a few years ago, described standard protocol being 3 cycles of VIP or BEP chemo followed up by resection, if possible. It's worth saying this cancer is rare enough that studies are not as plentiful as TC in general, but we can be thankful that Cisplatin based chemos were found to be helpful.

                              Regarding CT being more accurate I believe you can think of it as higher resolution. I've also read that PETs can also produce false positive mets.

                              * I've been a lurker on this site for some time, followed Blondie's story closely, if you have further questions feel free to message me.
                              Aug 2013: vague fevers, exhaustion, weight loss, night sweats
                              Sept 2013: became a father
                              Oct 2013: diagnosis PMNSGCT, ~5cm x 5cm, AFP: 43 bHCG: 0
                              Dec 2013: cycle 1, VIP 3wks
                              Jan 2014: cycle 2, VIP 3wks, became allergic to polysorbates
                              Feb 2014: AFP 813, bHCG: 0, scrapped chemo
                              Feb 2014: upper left lobectomy, 7x6x5 cm tumor, teratoma / adenocarcinoma
                              March 2014: AFP 70
                              March 2014: AFP 19
                              Apr 2014: AFP 11 !!!!
                              Feb 2018: AFP & scans clear for 4 years

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