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  • Round one down

    So here I am done with the first round of BEP and I figure I'll document my process for the archives.

    Frankly, so far, I'm surprised. I'm fine. I'm still waiting and bracing for the chemo to punch me in the face. I don't feel sick. I don't feel tired. I'm currently staring at a full beard, and short of dulling my sense of confectionery sweets (candy, not fruits) during the active week, I have all my tastes. The only setback was after my second bleo shot where I took a nap and missed my first post-bleo tylenol and the shakes and shivers hit me pretty hard for a good hour or two after I woke up. That was my own fault. I believe the key so far has been staying up and active. I'm still out every day, despite being off work, at the very least walking. I'm by no means the picture of physical health, either.

    Oh, there's the pissing, though. So much pee. It's absurd. I'm pretty sure there's laws of conservation of mass being broken. I haven't consumed or been injected with this much liquid. It's just dumb how much I'm peeing.

    I'm ready for round two coming up and my fingers are crossed that things progress as they are. As havoc-free as it's been so far, I'm ready for it to be over. Hopefully my round two update doesn't include me feeling like I went a few rounds with Tyson.

    Cheers, all.

  • #2
    Good to hear you are handling chemo well! Honestly for me my worst cycle was my first, each got better from there. It seems my story was different than most, but there is hope that chemo may not kick your butt like you think. Hang in there you'll be done far sooner than you know and you'll be cured and can move on!
    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 was 19. 8/16/17 AFP drops to 10. Doctor pleased ALL CLEAR!

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    • #3
      Glad to know you're handling things well! Keep that positive attitude! Not sure you'll keep all that hair though lol. I think 15 is the magic day so just be prepared. Embrace the peeing!!!!! You're taking in a ton of fluid and as long as you're peeing it out you won't need lasix. Stay upbeat and keep us posted! xo

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      • #4
        Hi Shabby. Congrats on your first round down. You mentioned in your post ( I took a nap and missed my first post-bleo tylenol and the shakes and shivers hit me pretty hard for a good hour or two after). Is the Tylenol something the doctors recommend after the bleo? My son is 29 and he just finished his first round of 3xbep on Tuesday. They do pump him up pretty good before with Benardryl before the bleo which seems to make him very sleepy. That night he said he and the shakes and shivers and a bad headache. Should I suggest taking Tylenol after the treatment? Wishing you all the best.

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        • #5
          Hi Shabby! My son breezed through the first cycle so well I was a tad worried they were giving him a placebo! lol Cycle 2 was his worst, but 3 and 4 were pretty rough too - so be prepared. He started losing his hair about day 14-15. Hair loss is sadly inevitable with this type of chemo.
          Each day is one day closer to the finish line! I'll keep you in my prayers!
          Mom to Zachary - dx. at the age of 15 - Stage IIIC mixed germ cell
          5.10.17 - Initial diagnosis
          Baseline markers: BhCG: 43,882 AFP: 138 LDH: 328

          5.16.17 - Left Radical orchiectomy (total tumor size 7x5x4cm)
          5.31.17 - CT Scan showed mets to retroperitoneal LNs (5.7x6.4x9.4cm, 1.7x2.6x3.5cm, 3.1x4.5x6.1cm)
          PATH: Mixed germ cell (75% teratoma, 15% embryonal ca, 8% yolk sac tumor, & 2% trophoblastic tumor) Spermatic cord margin, neg. Germ cell neoplasia in situ present.

          Post-op markers: BhCG: 73,837 AFP: 38 LDH: 412

          BEP#1 6.9.17 BhCG:77,721, AFP 34
          BEP#2 7.3.17 BhCG: 210, AFP: 6
          BEP#3 7.24.17 BhCG: 19 AFP: 3
          BEP#4 8.14.17 BhCG: 4.59 AFP: 5

          8.28.17 BhCG 2.46, AFP 6
          9.7.17 BhCG 1.78, AFP 3

          RPLND 9.14.17 - path report showed 100% teratoma in nodes removed! ALL CLEAR!

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          • #6
            Originally posted by Ann View Post
            Is the Tylenol something the doctors recommend after the bleo?
            I'm on 650mg acetamenophen 30 minutes prior to bleo and then another 650mg every 5-6 hours for four more doses. They won't give me bleo if I don't take the tylenol beforehand. They'll give me some and make me wait 30 minutes if I forget. It seems pretty important to them to offset the effects. Works so far.

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            • #7
              After my first round with the shakes, they gave my one tylenol prior to bleo, they didn't recommend taking any afterwards. I only got the shakes that one time.

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

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              • #8
                Ann, Tylenol with Bleo was mandatory with my son. He would spike a temp, shake and feel pretty lousy without it.

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                • #9
                  I am going to ask this question tomorrow when we meet with the PA. Did they give any of you Benadryl before the bleo? That is what is given to my son. He started round 2 of 3X BEP today. They said today his white blood cell count is the lowest it can go. He was lower then threshold for Chemo by a few % points but doctor gave approval to go ahead with treatment.

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                  • #10
                    Wishing you the best. Chemo is tough, everyone handles it differently, though all BEP and EP will lose hair either total or close on their head. Not everyone has nausea or throws up, same with being tired. Staying active throughout is very beneficial, even just walking.
                    17 year old son Grant dx 12/21/16
                    pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                    pre/o CT Scan 12/22/16 normal
                    r/o 12/22/16
                    Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                    PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                    -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                    2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                    BEP x 3 1/27/17
                    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.

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                    • #11
                      My son started 3xBEP on 9/25/17 his AFP was 133.7. Started 2nd cycle this week and AFP 26.9 on 10/17/17. I am very concerned that it is still over 25. Is this normal? Do we have to give it more time for the Chemo to work. HCG is staying the same at <1.

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                      • #12
                        My husband just finished his first round too, nausea, follicle pain, and headaches were the worst for him. He just started losing massive amount of hair on day 15 which was 2 days ago..he had super thick hair to start with though.

                        Good luck on your next round!
                        Crystal wife to Jonny (30) diagnosed

                        1/28/2015: got sick after dirt bike riding, right testicle swelling
                        5/2015: saw a dr who said it was torsion but since the swelling "went down" we shouldn't worry
                        02/2017: swelling increased tremendously no longer "went down"
                        07/24/2017: had realistic dream telling him it was cancer, went to ER, was told it was never torsion and the tumor was cancer
                        Afp: 4759
                        Hcg: <1
                        Ldh: 258
                        07/28/2017: right orchiectomy ct scans all clear
                        08/04/2017: nonseminoma stage 1 no invasion 40% ec 60% yolk
                        08/28/2017: pet-ct and brain ct due to headaches
                        Afp: 11.8
                        Hcg: <2
                        Ldh: 138
                        09/06/2017: pet and brain clear
                        09/18/2017 afp down to 2.9! Stage 1a
                        10/02/2017 1xbep starts

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                        • #13
                          Originally posted by Ann View Post
                          My son started 3xBEP on 9/25/17 his AFP was 133.7. Started 2nd cycle this week and AFP 26.9 on 10/17/17. I am very concerned that it is still over 25. Is this normal? Do we have to give it more time for the Chemo to work. HCG is staying the same at <1.
                          I would not be concerned at all about that. It seems to be following the correct trend. AFP doesn't immediately go to zero once the cancer is dead, your body has to filter the protein out of your bloodstream and excrete it. For this reason the half-life with no cancer present is 5-7 days. That means once all the cancer is killed, the AFP levels should drop in half each week. So the falling trend you are seeing is pretty much the expected trend. I would expect single digits and normal range AFP at the start of the 3rd cycle (11/7 - 3 more halvings from 10/17).
                          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!
                          9/18/2017 all clears up to this date!

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                          • #14
                            Originally posted by Ann View Post
                            I am going to ask this question tomorrow when we meet with the PA. Did they give any of you Benadryl before the bleo? That is what is given to my son. He started round 2 of 3X BEP today. They said today his white blood cell count is the lowest it can go. He was lower then threshold for Chemo by a few % points but doctor gave approval to go ahead with treatment.
                            No Benadryl at all. Just Tylenol before and after Bleo

                            Comment


                            • #15
                              biwi - thank you for the reply. Makes me feel better to know we are on the right trend and moving forward.

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