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2nd Recurrence - Seeking Advice for 4x TIP

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  • 2nd Recurrence - Seeking Advice for 4x TIP


    After undergoing 3x BEP for a recurrence, I am now awaiting treatment for a 2nd recurrence. bHCG is 2476, residual tumor from previous recurrence seems to be growing once again.

    My doctors are recommending 4x TIP, although we are waiting on Dr. Einhorn to let us know if we should be going for HDC instead. Does anyone have any experience with TIP? Is it similar to the way BEP is given (ex: 5days back to back)?

    I know some may be wondering why not RPLND: I am told the residual mass in encaving a vein, and they want to leave RPLND as salvage treatment.

    Jan/09 - Stage 1 Pure Seminoma. Right Orchiectomy
    Mar/13 - Recurrence. Stage 2 with 12cm tumor in retroperitoneum
    Apr-Jun - 3x BEP. Markers normalized, all clear
    Jan/14 - 2nd Recurrence. 1.1x2.6cm residual mass showing activity
    bHCG 2476
    *currently awaiting treatment*

  • #2
    Wow your first recurrence was after 4 years clear? That has to be discouraging.I guess that
    s why they want to follow us for so long...

    Sorry, I can't help you with TIP experience, but some others should be able to.

    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • #3
      discouraging is definitely the word! determined to get through it again

      Jan/09 - Stage 1 Pure Seminoma. Right Orchiectomy
      Mar/13 - Recurrence. Stage 2 with 12cm tumor in retroperitoneum
      Apr-Jun - 3x BEP. Markers normalized, all clear
      Jan/14 - 2nd Recurrence. 1.1x2.6cm residual mass showing activity
      bHCG 2476
      *currently awaiting treatment*

      Comment


      • #4
        Second line is not as long or frequently as first line. For my second line they did VIeP instead of TIP. I was hospitalized for both rounds roughly a week each time. I can not speak for TIP, but my was,because of the heart risk. Second line is a lot higher dose than first line in a shorter period. Then I started HDC a couple of weeks later. HDC is pretty much all inpatient with a short freedom in between rounds. HDC is given in the first 4 days and on day 7 you get your stem cells reintroduced. Then you wait for your numbers to bottom out and start to climb. The day it starts to,climb is your graft day. Then you should get released for a,little bit of freedom. Then roughly 10 to 14 days later you repeat the process.
        Basically I had second and third round because my tumors were in some pretty hairy places. Mainly wrapped,around. Aorta and IVC.
        They may do second line to stablize your spread and then have you go to HDC.
        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


        • #5
          I have the same problem! wrapped around aorta at first and now they think around IVC. ive been told thats why surgery is still pending.

          Jan/09 - Stage 1 Pure Seminoma. Right Orchiectomy
          Mar/13 - Recurrence. Stage 2 with 12cm tumor in retroperitoneum
          Apr-Jun - 3x BEP. Markers normalized, all clear
          Jan/14 - 2nd Recurrence. 1.1x2.6cm residual mass showing activity
          bHCG 2476
          *currently awaiting treatment*

          Comment


          • #6
            Hey Louis, what kind of treatment did you go for after right orchiectomy? 1x carboplatin?

            Comment


            • #7
              Are you coming down to MD Anderson for treatment? My doctors recommended 4x TIP for my recurrence. I had elevated bHCG 3 months after I finished 4x BEP and a month after RPLND. I just finished my 3rd TIP and the doctors decided to change the drugs for my fourth dose because of neuropathy in my hands and feet.

              Aside from the neuropathy, fatigue, and low hemoglobin, TIP was a lot like BEP. At MDA they like you to be inpatient for 5 days with BEP and TIP. I think the TIP is making me more fatigued than the BEP did. I'm also getting lightheaded from the low hemoglobin (I had to have a transfusion a couple weeks ago). I also am on Lovenox because I'm getting blood clots where the IV for my chemo goes in my arm. But overall the chemo is bearable.

              Also, about RPLND, my tumor was pretty large, wrapped around the aorta and IVC, and necrotic from all the chemo. I lost those nerves that are crucial to ejaculation, but my surgeon was able to get the tumor out. If you end up getting the RPLND find someone who does a lot of them. My urologist does several a week. It took him a few hours more to do my surgery, but it was a lot more complicated.
              Last edited by -Austin-; 02-10-14, 05:21 PM.
              Back pain Nov 2012
              Got Engaged 4/27/13
              Swollen neck lymph node 5/13
              Diagnosed with stage IIIB non-seminoma 6/13/13
              AFP 3,511
              Beta HCG 19,482
              Lung and lymph node metastasis
              Large tumor in abdomen caused my back pain
              Testicular tumor could only be seen with ultrasound
              4xBEP 6/25/13-9/10/13
              Graduated college 8/15/13
              Markers normalized
              RPLND and Orchiectomy 11/11/13
              Beta HCG: 38.5 on 12/17/13
              Start 4x TIP 12/17/13
              Got Married on 12/27/13
              Neuropathy: plans change. 3x TIP + 2x ATP

              Comment


              • #8
                @Leo, unfortunately for myself surveillance was chosen as the best plan of action after the orchiectomy. markers were normal and they felt they caught it soon enough.

                @Austin, I went down to MD Anderson in Houston for the evaluation and it was Dr. Pagliaro that suggested TIP. but since im a veteran the VA is having me undergo treatment at the VA hospital. How big was your tumor at the time of surgery? I had a 12 cm mass that shrunk significantly after bep. I'm not looking forward to surgery one bit! it does bother me more than the thought of more chemo. luckily ill be able to have surgery done at I.U. in the event they decide to go for it.

                Jan/09 - Stage 1 Pure Seminoma. Right Orchiectomy
                Mar/13 - Recurrence. Stage 2 with 12cm tumor in retroperitoneum
                Apr-Jun - 3x BEP. Markers normalized, all clear
                Jan/14 - 2nd Recurrence. 1.1x2.6cm residual mass showing activity
                bHCG 2476
                *currently awaiting treatment*

                Comment


                • #9
                  Mine was only 3.9x6.6 cm. Still stage 3b though. I found the cancer when a lymph node in my neck was swollen.
                  Back pain Nov 2012
                  Got Engaged 4/27/13
                  Swollen neck lymph node 5/13
                  Diagnosed with stage IIIB non-seminoma 6/13/13
                  AFP 3,511
                  Beta HCG 19,482
                  Lung and lymph node metastasis
                  Large tumor in abdomen caused my back pain
                  Testicular tumor could only be seen with ultrasound
                  4xBEP 6/25/13-9/10/13
                  Graduated college 8/15/13
                  Markers normalized
                  RPLND and Orchiectomy 11/11/13
                  Beta HCG: 38.5 on 12/17/13
                  Start 4x TIP 12/17/13
                  Got Married on 12/27/13
                  Neuropathy: plans change. 3x TIP + 2x ATP

                  Comment


                  • #10
                    Dr. Pagliaro and the other GU doctors have been involved with my treatment plan. There's a meeting they have every Tuesday to discuss their cases and make complicated decisions. My relapse wasn't too bad and was caught early, so there was some debate about if I was getting too much chemo for a relapse with low maker numbers. My surgeon was Dr. Ward (he was a Navy doctor, but I doubt that affects if the VA or your insurance covers him). He does a few RPLNDs a week. Recovery from the surgery wasn't too bad. It's better than having cancer.
                    Back pain Nov 2012
                    Got Engaged 4/27/13
                    Swollen neck lymph node 5/13
                    Diagnosed with stage IIIB non-seminoma 6/13/13
                    AFP 3,511
                    Beta HCG 19,482
                    Lung and lymph node metastasis
                    Large tumor in abdomen caused my back pain
                    Testicular tumor could only be seen with ultrasound
                    4xBEP 6/25/13-9/10/13
                    Graduated college 8/15/13
                    Markers normalized
                    RPLND and Orchiectomy 11/11/13
                    Beta HCG: 38.5 on 12/17/13
                    Start 4x TIP 12/17/13
                    Got Married on 12/27/13
                    Neuropathy: plans change. 3x TIP + 2x ATP

                    Comment


                    • #11
                      Speaking of VA and HDC, they will either fee base,it out or will have you go to Vanderbilt medical in Nashville. Literally the VA transplant unit is run by Vanderbilt doctors. Your inpatient but you can walk around the complex all masked up. The food is God aweful but they have alot of cafeterias around the complex. I survived on naked fruit drinks. It took the VA a month to decide who could get me in sooner IU or Vanderbilt, thankfully it was covered 100%
                      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


                      • #12
                        @Austin, thanks for the info man it def helps. especially about the surgery.


                        @eodtech you are lucky bro. i just got word that very recently the VA stopped sending patients to outside hospitals for HDC with stem cell transplant. im told ill be going yo san antonio if they decide for it. not looking forward to it one bit im sure you can imagine why.

                        Jan/09 - Stage 1 Pure Seminoma. Right Orchiectomy
                        Mar/13 - Recurrence. Stage 2 with 12cm tumor in retroperitoneum
                        Apr-Jun - 3x BEP. Markers normalized, all clear
                        Jan/14 - 2nd Recurrence. 1.1x2.6cm residual mass showing activity
                        bHCG 2476
                        *currently awaiting treatment*

                        Comment


                        • #13
                          Vanderbilt is still part of the VA system. It is just like any other VA hospital they are co located to a teaching hospital
                          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


                          • #14
                            Lou I responded to your private message. Don't worry you will get through it, HDC is rough but you will get through it. Have you filed for social security yet? recurrent TC is considered by SSA to be a automatic approval for SSDI. You should not have to wait very long to start getting benefits. 3 to 4 months tops unless SSA screws up like they did mine during the govt shutdown. I ended up in SSA cyber space so I had to ask WTF in person. So I should start getting my benefits next month. They will pay you benefits from the date you are disabled. So in my case it was back in May when I had RPLND. I only worked like 3 weeks total after surgery through August when I relapsed again. I haven't been able to work since because of VIeP and then HDC treatment.
                            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


                            • #15
                              @eodtech thanks for all the info! i just recently applied, i hesitated last year when it came back but now that its back again this year i went for it. and yea i def put when this all started as the official date. ill be writing you back here shortly bro

                              Jan/09 - Stage 1 Pure Seminoma. Right Orchiectomy
                              Mar/13 - Recurrence. Stage 2 with 12cm tumor in retroperitoneum
                              Apr-Jun - 3x BEP. Markers normalized, all clear
                              Jan/14 - 2nd Recurrence. 1.1x2.6cm residual mass showing activity
                              bHCG 2476
                              *currently awaiting treatment*

                              Comment

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