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3C,WhiteSnow

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  • 3C,WhiteSnow

    Hi, I am writing about my TC-path from (06/01/2019) – (present). I wish to share my experiences, and learn from other members. I will first give a brief timeline of my treatments, and then my thoughts.
    (tl;dr: left orchiectomy, 4xBEP, RPLND, left nephrectomy, aortic homograft,…(current time)...future treatments)

    Background Information:
    I am aged 23 years. I graduated Penn State University with a bachelor’s degree in Petroleum and Natural Gas Engineering in 2018. At the time of diagnosis, I was a full-time student further pursuing education. I have since halted my education to focus on treatments.

    Pre-chemotherapy Timeline:
    06/01/2019: Requested an ultrasound of my testes as my left felt like it was larger than my right.
    06/05/2019: Experienced my first tonic-clonic seizure. CT-scan of the head shows clear.
    06/11/2019: Left orchiectomy @ local hospital. Pathology shows mixed germ cell tumor composed of seminoma (15%) and postpubertal teratoma (85%).
    06/18/2019: Sleep deprived EEG and MRI conclude that I have epilepsy. Head is clear of any masses.
    06/21/2019: CT-scan of chest, abdomen, and pelvis show masses in the lungs, neck, retrocrural space, and retroperitoneum space.
    06/24/2019: AFP- 206.8 HCG- 72,986 LDH- 781

    1st-Line Chemotherapy Timeline:
    07/01/2019 – 09/17/2019: Received 4x-BEP chemotherapy in an outpatient setting.
    07/18/2019: AFP- 107.0 HCG- >1,000 LDH- 242
    08/13/2019: AFP- 6.8 HCG- 34 LDH- 171
    08/29/2019: AFP- 4.4 HCG- 13 LDH- 195
    10/03/2019: AFP- 3.1 HCG- 4 LDH- 190

    10/02/2019: PET/CT scan show the masses shrunk a small amount. All masses in the lungs, neck, retrocrural space, and retroperitoneum space are still much larger than 1 cm.

    UPenn Timeline:
    10/25/2019: Went to UPenn to meet with Dr. Vaughn. Says surgeries will be needed.
    10/28/2019: AFP- 2.4 HCG- 2 LDH- 152
    10/31/2019: CT-scan of head shows clear; CT-scan of abdomen, pelvis, chest, neck show the masses shrunk a smaller amount. Still larger than 1 cm.
    11/04/2019: Went to UPenn to meet with Dr. Guzzo who will be performing the RPLND.
    11/18/2019: RPLND, left nephrectomy, and aortic homograft @ UPenn. Pathology shows mostly teratoma and necrosis.

    The Oh-no Timeline:
    12/06/2019: AFP- 2.3 HCG- 10
    12/18/2019: AFP- 2.0 HCG- 21
    12/30/2019: PET/CT scan shows previous masses shrunk or stayed the same. However, a few new smaller masses appear in the lung.
    12/31/2019: MRI of head shows clear.
    01/06/2020: AFP- 2.0 HCG- 98
    ………

    From my pathology, I know my cancer isn't just 15% seminoma and 85% teratoma as my HCG was very, very, very high before treatment. There must be some small component of either choriocarcinoma or embryonal carcinoma with it.

    My testosterone levels are normal. I do not use marijuana. My luteinzing hormone level is normal. But,... my HCG is rising fast, so it must be from some of the cancer still being present. My options are either doing conventional dose (TIP) or high dose (TI-CE) as salvage chemotherapy. I am leaning towards the high dose (TI-CE) because my current kidney functions are 'meh' from the 4xBEP and left nephrectomy. My last blood work showed my creatinine level as 1.41 and eGFR as 70. I feel that if I would do TIP and it doesn't work; I will not have the option to do TI-CE as a 3rd-line chemo without major repercussions (kidney failure, death). However, if I do TI-CE and it doesn't work, then TIP would have not worked anyway... is this a correct way of thinking or no?

    Anyhow, Hi!
    Attached Files
    06/11/19: Left orchiectomy (15% seminoma, 85% teratoma)
    07/19-09/19: 4xBEP
    11/18/19: RPLND, left nephrectomy, aortic homograft

  • #2
    From my understanding, TIP and TICE work differently, and there's no way to predict which will evoke a better response from your cancer. That seems to be why they're conducting the Tiger Trials between the two. We also reasoned that TICE sounds worse so it must be better, but I have no way of knowing if that was the right move. Damn time machine is broken.

    Comment


    • #3
      Hi, EDER,

      Sorry to hear you are going through such situations.

      I have no knowledge about so serious case.

      I do want to remember you contacting Dr. Einhorn. I think maybe you already reached him. Under his care will be one of the best solutions. He is the best TC expert. Meantime, IU can also review your pathology slides. It would also helpful when you are clear with your histology. I saw some advanced cases were successfully treated with unregulated treatment.

      All the best to you!

      Amy, Ran’s mom
      Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma ,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teratoma .Back to surveillance 05/02/19 Blood work all normal

      08/23/2019 normal
      12/04/2019 normal.
      04/01/2020 normal.

      Comment


      • #4
        Originally posted by WhiteSnow View Post
        My testosterone levels are normal. I do not use marijuana. My luteinzing hormone level is normal. But,... my HCG is rising fast, so it must be from some of the cancer still being present. My options are either doing conventional dose (TIP) or high dose (TI-CE) as salvage chemotherapy. I am leaning towards the high dose (TI-CE) because my current kidney functions are 'meh' from the 4xBEP and left nephrectomy. My last blood work showed my creatinine level as 1.41 and eGFR as 70. I feel that if I would do TIP and it doesn't work; I will not have the option to do TI-CE as a 3rd-line chemo without major repercussions (kidney failure, death). However, if I do TI-CE and it doesn't work, then TIP would have not worked anyway... is this a correct way of thinking or no?

        Anyhow, Hi!
        Hello WhiteSnow, I'm sorry you are dealing with this. If you read my story, my brother went through something similar last 1'5 year.

        First of all, you say your HCG is rising fast, I suppose you tested it more than once, as you need to see evidence of it increasing and not just an elevated test result (could be a false positive).

        Second: do you have any radiology report? I mean, do you know where is the cancer? Is there one spot or more?

        I'm asking this because if there is just one spot maybe surgery is an option for you, so this is a VERY IMPORTANT thing to know.

        In the case resection of the tumour masses is not an option (it was the brother's situation), Dr Einhorn recommended HDC in his case, and I recommend you to contact him INMEDIATELY, let him to tell you what is the best for you.

        About "first TIP and then HDC, or first TIP and then no-HDC, or first HDC and now no TIP is possible..." let me tell you something: in my brother's case Dr Einhorn recommended HDC, my brother did it and cancer returned, then we asked what to do and Dr Einhorn said that TIP wouldn't be helpfull, so he recommended another regimen (Gemcitabine + Paclitaxel) and it went well.
        Later the b-hCG begun to rise again and a surgery (it was a solitary lung spot) keep him clean for more than 2 months now, but let me tell you something, if needed we will try TIP if no other option is available, we don't care if it is supposed to be helpfull or not, the only important thing is if my brother can deal with it, and he is strong and can.

        If I were you, I would go for the strongest chemo regimen that could kill this damned thing forever, but if you have kidney problems, you need a DOCTOR opinion, and tests to know what is better for you.

        All my best wishes to you, please keep us updated.

        Comment


        • #5
          By the way, I forgot to mention a very important thing: if you can, it is a good idea to participate in Make an Impact program from MSKCC, they can do a genetic test (for free) of your tumour sample, and maybe it can give you some very usefull information about possible mutations of your tumour (in my brother's case, it was positive for c-kit and a new drug called Imatinib was added to his arsenal of possibilities). It can take 6 weeks to be completed, so it's a good idea to do it now, just in case it's needed in a future.

          Here is the link: https://www.mskcc.org/research-progr...gy/make-impact

          Comment


          • #6
            HCG results have been increasing since the beginning of December. All the tests were done at the same lab.
            12/06/19 -> 10
            12/18/19 -> 21
            01/06/20 -> 98

            My last radiology report (12/31/2019) is summarized as:
            1. Mixed findings for response to therapy.
            2. Mildly decreased FDG uptake in the left supraclavicular lymph node which is not significantly changed in size.
            3. Decreased FDG uptake in previously seen bilateral pulmonary nodules with overall decrease in size. However, there is a new mildly FDG avid 6 mm nodule in the right lower lobe for which new metastasis is suspected.
            4. Overall improvement in previously seen retrocrural and retroperitoneal disease. Interval retroperitoneal nodal dissection by history.
            5. However, there is a new small FDG avid left para-aortic lymph node suspicious for metastasis.
            6. New FDG uptake in the right suprarenal region including at the right adrenal gland without obvious findings on CT. Metastasis should also be considered.

            Multiple surgeries (2-3?) would have to be done to remove most of the lesions. So, I have a few lung nodules that are <1 cm. A patchy cluster in my right, lower lobe has almost clear. However, a new 6 mm nodule was found in my right, lower lobe. One right retrocrural node measuring 4.0*2.7 cm. One supraclavical node measuring 4.9*2.2 cm. Since my HCG has been rising, and some new spots are found, I believe my cancer is still active.

            I think both TIP and TI-CE similarly affect the kidney. Probably best to do a urine lab to actually know where my kidney stands. Either way, I most likely need salvage chemotherapy, and would rather go for the 'stronger' and possibly more 'successful,' at the expense of more post-chemotherapy complications.

            Hermana, how did your brother handle the HDC treatments?
            06/11/19: Left orchiectomy (15% seminoma, 85% teratoma)
            07/19-09/19: 4xBEP
            11/18/19: RPLND, left nephrectomy, aortic homograft

            Comment


            • #7
              Originally posted by Hermana View Post
              By the way, I forgot to mention a very important thing: if you can, it is a good idea to participate in Make an Impact program from MSKCC, they can do a genetic test (for free) of your tumour sample, and maybe it can give you some very usefull information about possible mutations of your tumour (in my brother's case, it was positive for c-kit and a new drug called Imatinib was added to his arsenal of possibilities). It can take 6 weeks to be completed, so it's a good idea to do it now, just in case it's needed in a future.

              Here is the link: https://www.mskcc.org/research-progr...gy/make-impact
              I did not know about this. Just filled it out, thanks
              06/11/19: Left orchiectomy (15% seminoma, 85% teratoma)
              07/19-09/19: 4xBEP
              11/18/19: RPLND, left nephrectomy, aortic homograft

              Comment


              • #8
                So, in my not-medical opinion, hCG is increasing, but not rapidly (and I take this as a good sign).

                It is true that it seems that surgery is not an option now (and maybe your doctors told you so), and just remember you only took one kind of chemo (BEP), so you have many options yet.

                Now the question is: TIP vs TI-CE. I would go for Dr Einhorn opinion with no doubt.

                About my brother experience with HDC: I was with him 24h during the 2'5 months it lasted. He did HDC at Simon Cancer Center in Indianapolis with Dr Einhorn, we felt there like HOME.

                I think he did remarkably well, with a very good control of side effects, he did it as outpatient but had to be admitted as an inpatient two times (once for cycle), the first one was the worst (don't drink orange juice, or anything acid during the chemo PLEASE), he developed a strong diarrhea (we didn't know what strong diarrhea means until that moment, it was due to a bowel muchositis) and fever. The second round was so much better...

                He recovered very well and very fast although he lost a lot of weight. But if I have to answer to your question in a briefly way, all I have to say is: he did remarkably well. It was not so bad as it seems, not at all, but please, go to a CENTER OF EXPERTISE, it can make a huge difference.

                There is a thing: if you do TI-CE and cancer returns, then if you want to do HDC your kidneys and overall physicall status will be worse to face HDC, than if you do HDC right now (but you will want to go for HDC if you didn't).

                Many times it seems like if you skip TIP and go right for HDC you're "missing" an option, but I never though this way, I always though that I wanted to hit cancer in the more definitive way, like "the next and the LAST battle against cancer". We did HDC always accompanied with Dr Einhorn opinion (as I recommended you), and if you are afraid of your kidneys, and yes, TIP also affects kidneys, please follow your doctors and Dr Einhorn advice.

                Comment


                • #9
                  Have they re-scanned your remaining guy?
                  Jan, 1975: Right I/O, followed by RPLND
                  Dec, 2009: Left I/O, followed by 3xBEP

                  Comment


                  • #10
                    Scrotal ultrasound of the remaining testicle is certainly a good thought as would a testosterone challenge. However, from the imaging it appears that there are new lesions in the lungs which may be the cause of the elevated b-hCG. There are no head to head comparisons of standard second-line therapy vs. High dose chemotherapy with stem cell rescue, as mentioned and why the TIGER trial is being done. Glad to hear you reached out out to the Make An Impact program as well.

                    Are you still having neurological symptoms as I noticed they kept doing brain MRIs as well? If so, have they mentioned anything about paraneoplatic syndrome?

                    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

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