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All clear! (for now anyway)

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  • All clear! (for now anyway)

    My husband had his 6 week post treatment scan at 10 am this morning. At 2 pm, his oncologist called saying that she just got the full report off her fax machine and that his scan is completely clear-no evidence of metastatic disease, no enlarged lymph nodes, just a clean report. He has never had a completely clean report before. Even when they felt he was clear after BEP I think he still had a lymph node that was a little over a cm. We are obviously ecstatic TIP and transplant has been a long road, let alone all the surgeries and BEP the year before. Obviously we still have a long road ahead full of scanning, transplant recovery, and the dreaded possibility of recurrence but it is nice to be NED for now.

    Getting an error when trying to update the signature but here is the info.

    7/2016 Right testicle swollen and hard after injury
    7/2016-3/2017 Multiple ultrasounds and tumor markers drawn
    4/2017 Finally right I/O due to more enlargement. Pathology: pure seminoma
    5/2017 CT showed 1 enlarged para-aortic lymph node
    5/2017-7/2017 BEP x3
    9/2017 All clear
    12/1/2017 Recurrence: lymph node has returned to previous size
    1/2018: Residual mass fully resected. Pathology showed pure seminoma but mostly necrotic tissue. Margins clear.
    3/2018: CT showed recurrence. Liver mets and multiple enlarged nodes. Mass putting pressure on ureter. Kidney stent inserted
    3/2018-4/2018: TIP x 2
    5/2018-7/2018 HDC and autologous SCT x 2
    8/2018 CT scan. All clear.
    Last edited by Skywalker; 08-08-18, 06:09 AM.

  • #2
    Take every victory you can. I know all to well the for now thinking. But you must stay postive and take it as 1 step closer to getting your life back to somewhat normal as can be.
    Jan 2012- U/S mass in Left testicle
    Feb 2012- I/O performed to remove cancer
    Mar 1,2012- pathology pure seminoma
    Mar 7, 2012 PET SCAN stage IIa
    April 2012 Mayo clinic carbolite.
    May 2012 carbolite failed, started BEP x3
    August 7th 2012- BEP complete
    April 2013 CT/PET show relapse
    May 2013 RPLND
    Aug 2013 Relapse again Started VIeP x2
    Oct 2013 HDC AUTOLOGOUS
    Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
    Feb 2014 confirmed false positive all clear FINALLY !
    Jan 2015 1 year cancer free Pet/CT scan
    Jan 2016 2 years cancer free "Pet/CT scan
    Jan 2017 3 years cancer free "Pet/CT scan
    Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

    Comment


    • #3
      That’s fantastic news!
      3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!

      Comment


      • #4
        Thanks! Eodtech2001 I have thought of your case so often in moments that I needed something to hope for.

        Comment


        • #5
          I am glad my story and journey have helped give you hope. I posted awhile ago that if anyone ever needs to talk they can call me or email me. 904 600 1019.
          The next step is the recovery stage, stay home relax and heal. Have you filled for SSDI? Has anyone explained to you what will more thsn likely happen to your digestive system? Has anyone explained the immunization process you will have to have? Again im here if you need me
          Jan 2012- U/S mass in Left testicle
          Feb 2012- I/O performed to remove cancer
          Mar 1,2012- pathology pure seminoma
          Mar 7, 2012 PET SCAN stage IIa
          April 2012 Mayo clinic carbolite.
          May 2012 carbolite failed, started BEP x3
          August 7th 2012- BEP complete
          April 2013 CT/PET show relapse
          May 2013 RPLND
          Aug 2013 Relapse again Started VIeP x2
          Oct 2013 HDC AUTOLOGOUS
          Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
          Feb 2014 confirmed false positive all clear FINALLY !
          Jan 2015 1 year cancer free Pet/CT scan
          Jan 2016 2 years cancer free "Pet/CT scan
          Jan 2017 3 years cancer free "Pet/CT scan
          Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

          Comment


          • #6
            Great to hear! Hope you have future all clears and you two can start moving back to normal life!
            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


            • #7
              Eodtech,

              We haven't heard anything about what might happen to his digestive system?

              We have been informed about the vaccination process. I am slightly concerned because we got our baby his 12 month shots the other day and it didn't cross our mind that he isn't supposed to be in close contact with people who have gotten live vaccines. He isn't taking care of the baby right now but they obviously live in the same house. I'm going to have to ask the doctor about it later today. I'm hoping it will be ok. My husband's white count is good and he isn't neutropenic.

              I probably could use a little advice about the SSDI process too. I have started the application and my husband has enough credits to qualify for SSDI. I know he became eligible based on their guidelines when his cancer recurred after BEP but we have not completed the process. How long can you stay on SSDI after transplant? He no longer has a job to go back to since we've been doing this so long and I have no idea when he will be ready to work again. He can't really feel his hands or feet due to neuropathy from chemo.

              How long after transplant did you feel like you reached your "new normal" energy wise? My husband does seem to be getting better every day but he is just taking it easy at this point. Eventually he would like to be able to take care of our kids during the day but I don't know how many months out that will be.

              Comment


              • #8
                Its easier if you call me because its alot to try and type on here. 904 600 1019.
                As for live vaccines as long as he doesnt get it he will be okay. My grand daughter was born right after i finished HDC and i had her everyday. As long as the child isnt going to virus a factory "daycare" and he limits his contact with people and practices good hygiene the risk is reduced.
                As for SSDI once approved it wont br reviewed until 3 yrs later. He should be able to apply for a CAL condition and he should start getting ssdi with a month or so. Again its alot to cover on here but if you call me with pen and paper and laptop in hand i can help you out
                Jan 2012- U/S mass in Left testicle
                Feb 2012- I/O performed to remove cancer
                Mar 1,2012- pathology pure seminoma
                Mar 7, 2012 PET SCAN stage IIa
                April 2012 Mayo clinic carbolite.
                May 2012 carbolite failed, started BEP x3
                August 7th 2012- BEP complete
                April 2013 CT/PET show relapse
                May 2013 RPLND
                Aug 2013 Relapse again Started VIeP x2
                Oct 2013 HDC AUTOLOGOUS
                Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
                Feb 2014 confirmed false positive all clear FINALLY !
                Jan 2015 1 year cancer free Pet/CT scan
                Jan 2016 2 years cancer free "Pet/CT scan
                Jan 2017 3 years cancer free "Pet/CT scan
                Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

                Comment


                • #9
                  The best news!!! Keeping your husband and you in my thoughts as he starts the recovery process.
                  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


                  • #10
                    That’s definitely good news!!!!
                    6/2016 - Right I/O; 35% Yolk Sac, 35% Teratoma, 10%EC, 20% Seminoma with LVI; AFP elevated; CT scan clean
                    7/2016 - markers normal; confirmed Stage 1B; surveillance
                    8/2016 - markers normal
                    9/2016 - markers normal
                    10/2016 - markers normal; CT scan revealed 3mm lung nodule
                    12/2016 - markers normal
                    2/2017- markers normal; CT scan confirmed lung nodule grew to 14mm; confirmed relapse
                    3/2017 - 3xBEP
                    5/2017 - finished 3xBEP
                    6/2017 - markers normal; no size reduction in lung nodule
                    8/2017 - VATS and markers normal; continue to surveillance
                    12/2017 - all clear
                    ​3/2018 - all clear
                    6/2018 - all clear

                    Comment


                    • #11
                      That is great news! My fiance started HDC yesterday so this is very encouraging.

                      Comment


                      • #12
                        Good news!

                        Comment


                        • #13
                          My husband had his first 3 month scan this week since his post-treatment scan in August. Got another all clear! This is the first time he has ever had two completely clear scans back to back since this started. His labs are good and he is doing really well post transplant. He got his first shot today as the start of his re-vaccination process. We definitely won't be letting our guard down any time soon but I am really pleased with the results. I was honestly more nervous about this scan than the post-treatment scan. Also, so happy that we are going to be able to enjoy our holiday season. We found out about his recurrence December 1st of last year. And we are going to Disney World with our boys in a few weeks!

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                          • #14
                            Congratulations!

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                            • #15
                              Happy dance for you guys and the clean scans. It does get easier to deal with the pre scan jitters the farther along you go.
                              Did you ever go ahead with SSDI?
                              Jan 2012- U/S mass in Left testicle
                              Feb 2012- I/O performed to remove cancer
                              Mar 1,2012- pathology pure seminoma
                              Mar 7, 2012 PET SCAN stage IIa
                              April 2012 Mayo clinic carbolite.
                              May 2012 carbolite failed, started BEP x3
                              August 7th 2012- BEP complete
                              April 2013 CT/PET show relapse
                              May 2013 RPLND
                              Aug 2013 Relapse again Started VIeP x2
                              Oct 2013 HDC AUTOLOGOUS
                              Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
                              Feb 2014 confirmed false positive all clear FINALLY !
                              Jan 2015 1 year cancer free Pet/CT scan
                              Jan 2016 2 years cancer free "Pet/CT scan
                              Jan 2017 3 years cancer free "Pet/CT scan
                              Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

                              Comment

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