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  • New Guy from Muncie, Indiana

    Hello there everyone.

    I have been lurking on the boards here for a couple weeks and thought I'd finally post a quick intro. Most of the details are in my profile. But for the sake of introduction, my name is Brian. I'm 36yo and I work as a Production Manager and announcer in Public Radio....at our NPR affilate at Ball State University (how appropriate, huh? ). I am no stranger to health problems. I have received 2 kidney transplants in my lifetime...the first when I was 12 (from my dad), which lasted 20 years and then another one from a dear friend from church on 8/6/04. I am also visually impaired and do not drive a vehicle. But I drive people crazy, I'm told.

    When I was 8 or 9, I had surgery for undescended testicles. I've also taken steroids for years due to the immuno-suppresion for the kidney transplants. So both of those things put me in a higher-rick category to develop testicular cancer. Still, when the diagnosis comes, it's never easy and always a shock....particularly for my mother, who has struggled with cancers of her own, the death of her husband, and mutiple health problems with me. She is as much the patient, if not moreso, than I am. While we're ready to say, "Enough, God!", we still plug away - day by day - with the intent on getting through this latest trial. I have a myriad of people: coworkers, family, church, and close friends, who are supporting me. Best of all, due to my complicated health history, I was able to get in to see, and be cared for directly, by Dr. Einhorn himself. This is truly a blessing, and this level of care is well worth the 70min drive to and from Indianapolis for my BEP treatments.

    My TC story begins in about February 2006 when I started to notice a slight enlargement of my testicle. I didn't think too much about it. A month or two later I mentioned it to a close friend, who told me, "Well if you don't have any pain, you probably don't need to worry about it." And since I DIDN'T have pain, I kept trying to ignore it. I know. BAD ME! Finally, in May 2006 it was getting uncomfortable to ride my bike - or even just to sit down...so I had an untrasound, which led to a visit to the urologist....and out came the testicle. A few days later, we found out it was "seminoma."

    After that diagnosis, I had my first consult with Einhorn. I found out the orchiectomy alone renders the cancer 85% chance of no return. Decent odds. It also turns out that because of my kidney transplants, I am not a candidate for radiation, due to a significant danger posed to the organs. Einhorn also opted not to do chemo in 2006, not wanting to put undo stress on my body. After all, there was an 85% chance I would never need chemo. BUT...if the cancer would happen to come back sometime in the future, then chemo would cure it with nearly 100% certainty. So I was put on surveillence.

    And so a year went by. All my scans had been clear for more than a year. I was pretty optimistic. Then, in Sept., the call you don't wsnt. "Brian, we found a 5X2 cm mass in your lower back that wasn't there in May. We want to get a biopsy of it." Grrreeaat. Well, short-story-long, subsequent biopsy showed that the seminoma was back. So ta-daaah! It's BEP time! Coincidentally, this news came less than a week before the public radio station I work for started its pledge drive...which led me to contemplate, which would be worse: begging for money on the air or a nice IV chemo trip. Think about THAT the next time your station does a pledge drive.

    At any rate, fast forward to today. I've completed my first week of BEP. I went five days for 4 hours a day. For the next two weeks, I just get a quick influsion of Bleo, and that's it for the weke. Same goes for next week, and then I start my second cycle on Oct. 29th. So far I have not had any nausea (they load you up with plenty of drugs ahead of time to prevent that), and only periods of moderate fatigue. I've had a periods of a red-face/flush reaction to the Etoposide, but it was better after they slowed the drip a little. I am also a little irritable, and I'm not sleeping that well. But overall, I'd say I'm feeling surprisingly well right now. I know, of course, that my symptoms/side effects could change at any moment. After all, this is just week one. I've got eight more weeks of this. But, I'm hopeful and optimistic. I've been through lots of medical stuff. I've been known to be pretty resilliant.

    Dr. Einhorn is also keeping a very close eye on my kidney transplant, since the cisplantin carries a risk of kidney damage. Luckily, all the sailne they give me in the treatments hyrdates the kidney quite a bit. And they are checking my kidney labs (Creatinine) every day, to make sure the kidney is filtering okay. So far, so good.

    So, that's my story...in a nutshell (haha).

    You all were a huge help to me when I first started reading about TC and BEP, and I appreciate this site being here. Hopefully I can get to know some of you in the coming weeks/months.

    Blessings,

    Brian
    BrianE
    Muncie, IN
    Ultrasound/LeftOrch 5/2006
    Surveillance
    CT Scan showed 5X2cm Mass 9/2007
    3XBEP 10/8/07 - 12/3/07
    Receiving treament from Einhorn in Indianapolis

  • #2
    Welcome!
    I will pray for you as you continue your treatment.

    Pam
    Son Les diagnosed 5/7/07-Right I/0 5/9/07-Stage 3C Non-seminoma Mixed Cell Germ Tumor-Tumors in liver, lungs, lymph nodes, brain-4XBED Finished 7/31/07 HCG 9 tumors smaller, brain lesion gone-9/30/07 HCG 999-TIPx4 started 10/2/07, IU 11/29 Told he had Choriocarcinoma Syndrome HDC and Stem Cell Transplant to begin 1/3/08 Finished Transplant 3/1/08 HDC and Stem Cell Transplant Failure 3/20. 4/17 RPLND & Liver resection, Molecular profiling of tumor, 6/2 Hospice Services- Passed Away 12/12/08

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    • #3
      Welcome Brian. I am happy you have found this website. There are many amazing people here who offer a ton of info and most important support.
      Everyone here has kept me strong even at the hardest times.
      If you need anything at all.... questions answered, someone to talk to, or just vent, we are here for you. Believe me, we all attack like flies

      Welcome to the family!!!

      Sabrina

      Comment


      • #4
        Brian,

        Welcome to the TC Forums. Thank you very much for sharing your story with all of us. Despite all the hardships you have faced in your lifetime, I will say that you have clearly faced all of these with your head up high and taking the bull by the horns. Hats off to you, my friend. It's great to have you on board, and your help and advice are most welcome. Do let us know if there is anyway people around here can help. Cheers!
        "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
        11.22.06 -Dx the day before Thanksgiving
        12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

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        • #5
          Welcome Brain! You've had more than your share of stuff to deal with, but your attitude sounds great...and that'll carry you very far. You're in excellent hands with Dr E., and please keep us posted!

          Sabrina....flies? Guess it's better than Jersey mosquitos !
          Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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          • #6
            oops, did that come off sounding wrong? Basically I just meant we are all here for him.

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            • #7
              Welcome Brian, with all of your past problems it's good to see that you're being treated by Dr. E. Please keep your head up and us posted. If you need anything just ask or if you just want to vent that's fine to.
              Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

              Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

              Comment


              • #8
                Welcome Brian, I am fairly new to the site and you will find everyone here incredibly supportive. Keep the faith and dont forget to hug your mom,even with her heath problems Im sure she is worried about you!

                Comment


                • #9
                  VWM:
                  Great advise, all of us with mom's should give give them a hug. They do indeed have wings. Jaymo, hugging dads is ok to.
                  Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                  Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                  Comment


                  • #10
                    Welcome Brian and thanks for posting your story. It's good you found us! I am also a fairly recent addition to this family - a term I do not use lightly. Come by and vent or share to your heart's content! That's an important function of this forum....welcome again and good luck!
                    "Faith is being sure of what we hope for and certain of what we do not see". Heb 11:1

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                    • #11
                      Hi Brian, I want to welcome you too. One of my co-workers has been waiting for a kidney donor for almost two years. He works 10 hour days, goes to the dialysis in the evenings and is back to work the next morning. Truly inspiring. I am going to tell him how successful your transplants have been. You will conquer TC just as you have your other challenges. Thanks for sharing your story, you are a remarkable young man. Dianne
                      Last edited by Mom; 10-16-07, 11:30 AM.
                      Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
                      Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma

                      Comment


                      • #12
                        Originally posted by dollfin1204
                        oops, did that come off sounding wrong? Basically I just meant we are all here for him.
                        Not at all wrong, never heard that analogy and I'm just busting you! I get a visual of us attcking Brian and him chasing us with a giant swatter...kinda like that last picnic I went to!
                        Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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                        • #13
                          Hello Brian and welcome!! Sounds like you are a fighter and this will be another battle you will win!

                          If you need anything please just shout, good and loud, I wanna make sure I hear you down south!
                          Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                          Current DVT
                          Current testosterone replacement therapy, Testim.

                          "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

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                          • #14
                            Brian:
                            I couldn't let your soothing tone or comforting words go unshared. I hope everyone takes a moment to listen to some of your story. Part 2 of the story can be found here. I have no doubt you will win this current battle and go on to inspire others who have struggles in their lives.
                            Last edited by dadmo; 10-21-07, 07:57 PM.
                            Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                            Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                            Comment


                            • #15
                              I just received a wonderful email from Brian. It seems as if he's really doing quite well and will check in here when he can. He thanks us all for our support and he knows were here if he needs us. I think to make me a bit jealous he mentioned that he has a very active off-line life which may keep him too busy to check in everyday. All I can say to that is "good for him".

                              If any of you are interested he has a Saturday morning shift from 8 to 11am ET. You can hear him do the local inserts in Weekend Edition and Car Talk. You can listen on line at www.bsu.edu/ipr. Follow the links to listen via the Internet.
                              Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                              Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                              Comment

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