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Starting EP x 4 Monday 7/10/17

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  • #16
    JKRATZ,

    the IV anti-nausea and oral pills worked really well for me , and that seems to be pretty common. IV aloxi at the start of each long week, and zofram (ondancetron) by mouth. I once saw a talk by Dr. Larry Einhorn that said when they started with cisplatin without the drugs, the average number of vomits on day 1 of cycle 1 was 12. Now most people usually go all 4 cycles without getting sick thanks to the drugs. I just took them every morning even if i didn't feel sick. Also, my doc prescribed me xanax which really helped with nausea, anxiety of treatment, and just overall well being. He called it my chill out drug.

    Also, I gained about 20lbs with the steriods , so expect that.

    You are in good hands if you are seeing the folks at MSKCC, trust that

    Dx March 21 2016
    Right Orchiectomy march 25 2016
    60% embryonal 35% yolk sac 5% seminoma
    positive node on CT 1.4X1.3cm stage 2a markers rising, HCG 2300 AFP 25
    Started 4xEP april 2016
    Finished chemo July 2016, markers normal, complete radiographic remission
    RPLND MSKCC Aug 2016, removed something like 60 nodes all negative but one with teratoma
    Surveillance

    Comment


    • #17
      Originally posted by Jkratz View Post
      Thank you Dave for the kind and positive words.

      1st treatment down. Have a little headache which I am told is from the steroids.

      I think I am going to shave my head tonight. I am going to control this by cutting it off before the chemo controls it by killing the cells. I may even have my sons take turns carving something funny this way we can all get a laugh. ;-)
      Hi Joe,

      Aside from your headache, how was your first day?

      Comment


      • #18
        Hi Jay,

        Yes I too am getting a 30 minute drip of anti nausea medicine on day 1 and day 4 of the week on, and I have the ondancetron as well which i can take during my weeks off plus a script for Lorazapam which helps with anxiety as well as nausea. Not sure If i will be taking that pill for I really do not like to be out of it mentally. I was told to watch what I ate as well cause the steroids can add weight quickly.

        Did you lose your hair and how when did it go if you did? I am not sure what to do with mine. I have mixed emotions about just shaving it so I feel like I have the control of it but am also wondering If i am just jumping the gun.

        Thank you for your post it is nice to hear that this may not be as bad as my mind has conjured up. Glad to see that you are under surveillance.

        Comment


        • #19
          HI Jacob,

          The only thing I felt was a bit of tiredness but not enough to slow me down. I feel the same exact today with having a small headache and a bit of tiredness.

          How did your first 2 days go?

          Comment


          • #20
            it started really falling out on its own and in large amounts around 3 weeks. At first I thought it was kinda cool to see my hair fall out , but then it just started getting annoying/ depressing. Hey just do what is right for you, if you want to shave it, shave it. It's gonna fall out, might as well do it a way that will make you happy. My wife is a pharmacist and i remember her talking to the oncology pharmacist at the hospital and she was like, i dont think it will fall out for him, his hair is so thick, and the oncology pharmacist just laughed and was like like, yea its gonna go
            Dx March 21 2016
            Right Orchiectomy march 25 2016
            60% embryonal 35% yolk sac 5% seminoma
            positive node on CT 1.4X1.3cm stage 2a markers rising, HCG 2300 AFP 25
            Started 4xEP april 2016
            Finished chemo July 2016, markers normal, complete radiographic remission
            RPLND MSKCC Aug 2016, removed something like 60 nodes all negative but one with teratoma
            Surveillance

            Comment


            • #21
              Thanks Jay. I am going to shave it tonight. This time for sure. It's hard to come to grips with lol.

              Comment


              • #22
                Did you shave? My son's hair started falling out after first 5 day, just thinning to begin with. He kept most of his leg, arm hair, a little eyebebrow & eyelashes, but just about everything else went away. It has come back a completely different color(blond) and wavy.
                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.
                Grant is enjoying his senior year in High School Cancer Free!

                Comment


                • #23
                  I was lucky I suppose with my hair. Everything from the neck down seemed to stay. My beard and head hair started falling so I shaved them. Never went completely bald though kept most of the fuzz on my head. My eyebrows thinned but most hung around hopefully you'll be in my boat or better!
                  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! 11/16/17 All Clear! AFP continues to drop!

                  Comment


                  • #24
                    I did shave last night. Feels a little weird. I am sure it was for the better. I did not want to have to deal with patches and being too tired to deal with that too. Day three is over I and I am a bit more tired than the first two days. I guess this is the course. Thanks.

                    Comment


                    • #25
                      Jkrtaz - my son starting losing his hair BEP C1D16 so we shaved it and then he kind of grew back a 5 o'clock shadow of sorts. Just slightly scruffy. But I picked him up from band camp last night (C2D9) and he looked like he had gotten a fresh haircut from all the tiny hairs that had fallen out. I'm curious to see what it looks like tonight. As it was patchy bald last night.
                      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!

                      Comment


                      • #26
                        TC Mom,

                        Thanks. I wish your son the best of luck with his cancer. I will keep him n my thoughts.

                        Comment


                        • #27
                          Jkratz~ you will be glad you did, the hair falling out gets on pillows & shirts. Again, everyone is different, but head hair always goes, usually pubic hair & facial hair for TC chemo patients the rest really depends, but often thins if it does not fall out completely.
                          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.
                          Grant is enjoying his senior year in High School Cancer Free!

                          Comment


                          • #28
                            JKratz, glad you were happy with your decision to shave it. Day 5 will be over soon, and you'll have some time to recoup ! keep fighting!

                            Dx March 21 2016
                            Right Orchiectomy march 25 2016
                            60% embryonal 35% yolk sac 5% seminoma
                            positive node on CT 1.4X1.3cm stage 2a markers rising, HCG 2300 AFP 25
                            Started 4xEP april 2016
                            Finished chemo July 2016, markers normal, complete radiographic remission
                            RPLND MSKCC Aug 2016, removed something like 60 nodes all negative but one with teratoma
                            Surveillance

                            Comment


                            • #29
                              Thank you all. I am so very glad that I joined this page. It has made this way easier than I could've imagined. Day 5 is almost over and I am looking forward to the two weeks off. ;-)

                              Comment


                              • #30
                                JKratz - enjoy your two weeks "off." Watch some Netflix. I had planned to do some reading, but for me, I was too foggy brained to concentrate to read a book or even an article. I finished 4 x EP in April and feel pretty good more days than I don't. My experience was that I felt progressively worse and weaker with each cycle - some days were brutal, but others were manageable for sure. The key for me was to stay hydrated. My oncologist suggested drinking low cal Gatorade after I became severely dehydrated. I drank tons of the stuff and it really did help. Water was not enough for me.

                                Comment

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