Starting 3xBEP Next week

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  • Ryan Bi
    Registered User
    • Jul 2018
    • 126

    #31
    The same situation as we met. We could start at 3 pm after contact Dr.Einhorn. My son was treated with Neupogen at the end of cycle 2 long week.

    Personally, I would continue chemo on Saturday instead of Monday. I would rather try every possibility to get the treatment in time.

    Just for your reference.

    Best Regards

    Amy, Ran’s mumm
    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 Teretoma .Back to surveillance 05/02/19 Blood work all normal

    08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

    Comment

    • wjonw
      Registered User
      • Aug 2018
      • 31

      #32
      Hi All,

      I'm starting Cycle 3 on Monday. At this point, my onc has never suggested to stop the treatment even when my ANC was at .19, nor did he suggests any neupogen. He mentionned this is expected and the counts will fluctuate but that they keep treating unless any emergencies.

      I've been fine, just make sure to stay away from crowds and avoid germs. I've still been able to walk around and even go on a small 2m run during the B weeks after i've recovered.

      I wonder what makes onc act differently about the ANC and whether to wait or not. Personally i just want to get it over with so i'm fine for them to keep going but i do wonder why some oncs suggest a few day break.

      any ideas?

      BTW:
      29 y.o Stage IIB Pure Seminoma
      July 2018 left OI
      July 2018 surveillance
      Jan 2019 RP node 35mm X 30mm- Restaged from 1b to IIb
      Jan 2019 3xBEP

      Comment

      • Goodday
        Registered User
        • Jan 2019
        • 19

        #33
        My anc last week was at a .2<. This was as of February 22nd. Does anyone know when is it too low? I was rather surprised as to how low they got from one week to the next.
        12/14/2018- initial diagnosis cancer left testis
        12/18/2018-informed that it spread to my lower back
        12/27/2018- i/o left testis
        01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
        1/08/2019-Oncologist recommends 3xBEP
        2/4/2019-Treatment begins
        4/1/2019-last day of treatment
        6/1/2019-hope to be in remission

        Comment

        • MilanD
          Registered User
          • Aug 2018
          • 26

          #34
          My Anc wad 0.43 I believe on Monday but went to 0.97 on Tuesday and today (Thu) is more than 2.0 . So it is really rollercoaster. I think it will go down in week or two after long week. Most experienced testicular cancer oncologist do not recommend delay treatment or lower dosage unless fever and infection. I got my delayed for a day which was mistake. Now I am getting treatment at hospital on Saturday (hopefully).

          Comment

          • Davepet
            Registered User
            • Mar 2010
            • 4459

            #35
            I believe that they delay treatment when the counts go low when treating other types of cancers, they should not do so for TC.
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment

            • Goodday
              Registered User
              • Jan 2019
              • 19

              #36
              I finished week 4 this past week. This weekend has been nothing but rest and recovery. Felt the effects more this time around than the first round, but that was expected. It's been a rollercoaster of emotions to say the least. It's been a rough a week but looking to recover this week and next.
              12/14/2018- initial diagnosis cancer left testis
              12/18/2018-informed that it spread to my lower back
              12/27/2018- i/o left testis
              01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
              1/08/2019-Oncologist recommends 3xBEP
              2/4/2019-Treatment begins
              4/1/2019-last day of treatment
              6/1/2019-hope to be in remission

              Comment

              • Goodday
                Registered User
                • Jan 2019
                • 19

                #37
                Hi there, today I met with my onc. for a follow-up prior to starting round 3. I was happy to hear my that my beta hcg dropped to less than 1. I understand the 3 round standard protocol. But if my tumor markers are that low, is there really a need for the third round? My only conclusion is that it will kill off any remaining cancer cells. Has anyone had this experience before?
                12/14/2018- initial diagnosis cancer left testis
                12/18/2018-informed that it spread to my lower back
                12/27/2018- i/o left testis
                01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
                1/08/2019-Oncologist recommends 3xBEP
                2/4/2019-Treatment begins
                4/1/2019-last day of treatment
                6/1/2019-hope to be in remission

                Comment

                • JoeTheAstronaut
                  Registered User
                  • Dec 2016
                  • 344

                  #38
                  I think they want to make sure they kill all the micromets that might not even show up on the tests... Good to hear you're doing well!!
                  July 2016 - Left I/O
                  December 2016 - BEPx3
                  All clear for 2.5 years now + new baby!

                  Simplify Cancer: Man's Guide to Navigating the Everyday Reality of Cancer
                  My Testicular Cancer Support Kit
                  First Oncologist Visit Checklist
                  Simplify Cancer Podcast

                  Comment

                  • Mike
                    Administrator
                    • Apr 2008
                    • 973

                    #39
                    If the decision is made to use BEPx3 prior to chemo starting then it should continue without regard to tumor markers dropping. The old standard was to do BEPx4 for everyone and it was reduced to BEPx3 for those with good risk disease. It is great that the beta-hCG has normalized but the next round is still needed. Remember, some guys have metastasis and no tumor markers at all, so they don't always tell the full story. All the best on round 3.

                    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 [email protected] if you would like to chat privately so as to avoid any delays.

                    Comment

                    • Goodday
                      Registered User
                      • Jan 2019
                      • 19

                      #40
                      Got it. I talked to my onc about next steps once I am done with chemo. He referred to the National Comprehensive Cancer Network guidelines(https://www2.tri-kobe.org/nccn/guide...testicular.pdf)

                      Does anyone else's onc use this as their primary guideline or do each onc go by a case by case basis? I am looking forward to the finish line and would like some semblance in how surveillance works based on you, current patients, survivors and care takers. Also, would like to see if I can push for a different schedule. As you can tell, I am a bit anxious.

                      Any help is much appreciated.

                      Thanks.
                      12/14/2018- initial diagnosis cancer left testis
                      12/18/2018-informed that it spread to my lower back
                      12/27/2018- i/o left testis
                      01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
                      1/08/2019-Oncologist recommends 3xBEP
                      2/4/2019-Treatment begins
                      4/1/2019-last day of treatment
                      6/1/2019-hope to be in remission

                      Comment

                      • biwi
                        Registered User
                        • Jun 2015
                        • 861

                        #41
                        If you fit within the NCCN, it is definitely the best case treatment path to follow it. It has been tuned by experts over many years to achieve the best outcomes for the majority of the cases. Unless your case is very advanced or somehow extraordinary, NCCN guidelines are really the standard to follow.
                        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: begin 4xEP, end 9/18/15
                        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!
                        10/22/19: all clears up to this date!
                        4/8/24: stopped monitoring something like 2 years ago, still all clear!

                        Comment

                        • Goodday
                          Registered User
                          • Jan 2019
                          • 19

                          #42
                          Thank you for your feedback. I did come across an issue this past week in terms of side effects. I started feeling my lungs feel a bit blocked when taking deep breaths. During the past two cycles, I've recovered from it but this time around, its been lingering longer. I had my chest x-ray and it they came back negative. I will also be getting antibiotics and pulmonary lung function test.

                          With that said, my last two bleo treatments are on hold until we figure out my lung situation. My onc said he may consider another round of EP but it's not for certain. I had two masses that measured 2.6 x 2.6 cm at the level of the renal hilus in the left para-aortic space and just inferior to this is an additional nodal mass measuring approximately 3.1 x 2.1 cm.

                          Per my last blood work, my bhcg dropped to less than 1. I am wondering if an extra round of EP is overkill or if even the last two bleo infusions are necessary. Any feedback is much appreciated.
                          12/14/2018- initial diagnosis cancer left testis
                          12/18/2018-informed that it spread to my lower back
                          12/27/2018- i/o left testis
                          01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
                          1/08/2019-Oncologist recommends 3xBEP
                          2/4/2019-Treatment begins
                          4/1/2019-last day of treatment
                          6/1/2019-hope to be in remission

                          Comment

                          • biwi
                            Registered User
                            • Jun 2015
                            • 861

                            #43
                            So you have only had 1 bleo? If you only had that one bleo, and are going to stop bleo, I suspect the experts would all say switch protocols to 4xEP.

                            EDIT: also, I would also absolutely not drop bleo without performing the lung test. Chemo (EP) causes all sorts of sensations, and tiredness. I got quite a bit of shortness of breath and I didn't even have bleo. So I wouldn't be so quick to attribute it to the bleo.
                            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: begin 4xEP, end 9/18/15
                            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!
                            10/22/19: all clears up to this date!
                            4/8/24: stopped monitoring something like 2 years ago, still all clear!

                            Comment

                            • Violet0729
                              Registered User
                              • Feb 2018
                              • 85

                              #44
                              I thought pure seminoma spread very slow. Goodday did you wait too long to get your testicle checked before knowing it was cancer? I’m just curious since my husband has pure seminoma and after a year of surveillance, now it spread to a lymph node. I guess it took a year to spread. Now I’m scared.

                              Comment

                              • Goodday
                                Registered User
                                • Jan 2019
                                • 19

                                #45
                                Hi there. @biwi, we're definitely moving forward with a pulmonary lung function test before continuing with the last two bleo treatments. I suspect that it may be have been culmination of the past 7 weeks. It was a bummer to have put treatment on hold. I suspect this is nothing serious and can continue.

                                @violet0729 to give you some context, I had a physical done back in August with everything normal. Fast forward to Thanksgiving, that's around the time I started to feel some abnormality but I may have just ignored a week or two prior. Part of me is disappointed that I didn't get it checked out sooner.
                                12/14/2018- initial diagnosis cancer left testis
                                12/18/2018-informed that it spread to my lower back
                                12/27/2018- i/o left testis
                                01/06/2019- pure Seminoma pathology (hcg level dropped from 150 to 75)
                                1/08/2019-Oncologist recommends 3xBEP
                                2/4/2019-Treatment begins
                                4/1/2019-last day of treatment
                                6/1/2019-hope to be in remission

                                Comment

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