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  • Rplnd

    Hi all, haven't posted in a while. My brother had his RPLND on Dec. 11th. 29 lymph nodes removed, 2 with active cancer. He's healing slowly, but looks really good, he's up and walking around the hospital, they won't remove the drainage until he passes gas, and he's unable to do that. he can't sleep because the tube is irritating his throat, and he's starving he said. he can't even drink yet, so he last ate a meal last Fri. His Dr. talked with Dr. Einhorn from Indiana and after he reviewed all my brothers notes, he said 2 more rounds of chemo, "Salvage Chemo" Does this ever end!!!!!!!!!!!!!!!!! On top of it all, I go to his house to do a little cleaning for him and there is a foreclosure sign in front of the house, I won't dare tell him about that yet. I know there is a light at the end of the tunnel, but it's really dim right now. Thanks for this site, it really helps. Hope the rest of you have a very Merry Christmas. I will let you know of any updates.
    Krista
    Brother Diag. 10/05 Non-Sem.
    Right I/O 11/05
    Surv
    4XBEP 8/06
    RPLND 12/06
    2X VIP 1/22/07
    Only completed 1 Rd.

  • #2
    Hang in there. You and your brother will make it.
    Scott, [email protected]
    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


    Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

    Comment


    • #3
      Savin16:
      I really hate theat term "salvage chemo". What your brother is getting is standard for cancer that is discovered during an RPLND. There is nothing "salvage" about it. The doctors should really be calling it second line chemo. I know it's tough going right now but things will get better.
      Last edited by dadmo; 12-18-06, 09:05 AM.
      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


      • #4
        Hang in there!
        Lori and Jon
        Diagnosed 5/22/2006
        I/O 5/26/2006, Stage 3, Good
        Teratoma (Majority), Seminoma (10%), Yolk Sac
        3xEP then determined not working
        HDC w/stem cell transplant 8/16/06 to 9/25/06
        Chest and Neck surgery 10/9/06 - immature teratoma
        RPLND 11/16/06 - immature Teratoma
        2/29/2008 - markers continue to be normal!
        9/16/2008 - released from Dr. Einhorn's care

        Comment


        • #5
          Hello Savin16,

          Dadmo is right in his thinking. I had the RPLND myself back in May and they found 5 nodes with traces of cancer, so I went through two rounds of chemo to make sure that it was completely gone. My oncologist told me to think of the chemo as if you were trying to kill a fly with a sledgehammer, once you get it, its gone!!! He also told me that the chances of a reoccurance are VERY low, under 1%. I kept telling myself that I was in a 100 Meter Hurddle race and I'm at the last two before the finish line and let me tell you how great it was to cross that finish line!!! Tell your brother to keep his chin up, things will get better!

          Enjoy the holiday season!!!
          4/11/06 Markers: AFP-41.0 & HCG-88
          4/13/06 Left I/O
          4/19/06 Diagnosed w/ nonseminoma;80% yolk sac, 15% teratoma, and 5% embryonal carcinoma
          5/10/06 Markers: AFP-4.7 & HCG-1
          5/12/06 RPLND surgery @ HUP
          6/19/06 Started 2 cycles of EP
          7/14/06 Completed 2 cycles of EP

          8/19/11 - Received what I call now my "five year-all clear"!!!
          8/20/11 - First Livestrong Challenge in Philly! http://www.tc-cancer.com/forum/images/smilies/cool.gif

          Comment


          • #6
            Keep your spirits up. . .

            It is always darkest before the dawn . . .

            I will keep you all in my prayers during this ordeal!

            Comment


            • #7
              Rplnd

              Thanks for all your replies. Your all so great. My brother was sent home from the hospital Sat. night. (weird time to get sent home) around 7opm. My other brother stayed with him. He did ok considering. But now he doesn't want anyone to stay with him. I think this is dangerous. But I guess you want some sort of control in all this and the only control he has is to say who stays and who goes. They removed the staples before he left the hospital, I guess that's normal, what the heck is holding it together? Then he says he doesn't have to go back for 6 weeks, is that normal? Or should I call the Dr. myself? He is suppose to contact his oncologist today to schedule chemo after the new year. He's got no problem eating, he eats everything, he said the Dr. said whatever is comfortable. He's getting around slowly, but still getting around. So it's just a slow process. I have a question for those of you who had chemo after RPLND, was the chemo about the same for you, or worse because you've already went through 3 or 4 rounds, followed by major surgery and are just weaker. I know he will get through it, but the 3rd and 4th round were horrible for him, he couldn't eat or drink half the time, I would go at night and hook him up to saline for 2 hours to keep him hydrated. I know he can do it, but as stupid and terrible as it sounds, I don't know if I can, I just want to cry for him and say why. I know deal with the cards your dealt
              Krista
              Brother Diag. 10/05 Non-Sem.
              Right I/O 11/05
              Surv
              4XBEP 8/06
              RPLND 12/06
              2X VIP 1/22/07
              Only completed 1 Rd.

              Comment


              • #8
                Rplnd

                Yep do you believe it, staples out before he came home, I haven't looked at it, but I have no clue what's holding it together. My bros surgery was Dec. 11th and his recovery is very slow, as for some posts I read, men are up moving about in 3 weeks, he just tried to go back to work, desk job for now, he could only work about 4 hours. He's drained, no energy, but he also had 4 rds of BEP before the surgery, so I'm sure that didn't help. He also needs salvage chemo, I don't know when that's gonna start, he would never make it, he's too weak right now.
                Krista
                Brother Diag. 10/05 Non-Sem.
                Right I/O 11/05
                Surv
                4XBEP 8/06
                RPLND 12/06
                2X VIP 1/22/07
                Only completed 1 Rd.

                Comment


                • #9
                  Robert2112:
                  My son also had his staples out in 7 days. It scared the heck out of him the first time he had to sneeze.
                  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
                    Savin16:
                    Robert is correct on the terminology, the chemo after the discovery of live cancer cells in the lymph nodes will be adjunctive chemo not salvage chemo.
                    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


                    • #11
                      yes, my husband had his staples out after 7 days too and he did just fine. There are a lot of stiches in there holding everything in place. They do say if you are a smoker you will heal slower than the average person and because of that, staples should be left in longer. But my husband was not ever a smoker.

                      The two rounds of chemo are standard, but just think, then he will be all done. In fact, I think the last 2 rounds post RPLND are 3 days "on"...3 week break...3 days "on" then done. So if that is the case, it will be a much easier chemo than the 5 days "on"..bleo for the next 2 weeks then 5 days back "on"...at least that was the sched. my husband was on.

                      I am sorry to hear about his house, my heart aches for you and him. Keeping focusing on the positive. We met a man that has been through all the chemo he can have and would LOVE to just get his tumor markers low enough to even be able to have the RPLND. He is going through terrible treatment and his tumor markers are still 2500 (down from 450,000). So just the fact that your brother got to have the RPLND means he is recovering and that is a gift. Hugs and prayers to you and him!
                      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

                      Comment


                      • #12
                        Rplnd

                        Hi again,
                        Thanks again for all your responses. For my brother he had 4 rds. BEP, tumor markers were always normal throughout, so the Dr.'s say that didn't help in determining things. All tumors were gone, except for 2, they didn't get bigger, nor did they shrink, then his oncologist who is Dr. Frank Alfano at the Harold Leever Cancer Center here in Waterbury, Ct. said he needed the RPLND that chemo did what it was suppose to, now it's time for the surgery. We opted to find a different Urologist than the one that did his Orch. We feel that that Dr. did note he originally had enlarged lymph nodes, but never suggested the RPLND, had he done the surgery first, can something have been omitted? possibly. So he now sees Dr. John Taylor at UCONN medical center in Farmington Ct. He is a GREAT go getter Dr. and he was up front and didn't sugar coat anything, and that's what my brother needed. So he did the RPLND and after surgery, he and the oncologist both consulted with Dr. Einhorn and from the path reports said more chemo was needed. His urologist is the one that said "Salvage Chemo" we have yet to meet again with the oncologist to see about more chemo and what he calls it. So hopefully someone just did a blunder. From what I read, this 2 more rounds is normal and I PRAY TO GOD that's it. And I hope it is only the 3 days, that would really help. I could be wrong, but I think his survival rate is still way up there, he has just lost all hope, and without a positive attitude, your loosing the battle right there. If I could only get him to even read this site and see how many other men have this and have gone through what he has and even worse and come out of it ok, then I know that would help.
                        Krista
                        Brother Diag. 10/05 Non-Sem.
                        Right I/O 11/05
                        Surv
                        4XBEP 8/06
                        RPLND 12/06
                        2X VIP 1/22/07
                        Only completed 1 Rd.

                        Comment


                        • #13
                          You are being a good brother and standing by him and that is helping...trust me. He will grit his teeth through this and when he is finsihed and cancer free he will look bad and see how lucky he has been. I know that losing his home is a major set back but I feel better things are waiting for him. Having you is a real blessing for him, don't give up.

                          M.
                          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

                          Comment


                          • #14
                            Hey dude,

                            The aggressiveness of the treatment is what makes TC highly curable. It's the "highly curable" part that should get your brother the motivation to make it through the finish line. Having you as an integral part of his support system is huge. I've only been around for a little while, but I can tell you that the people in this forum have helped tons. Hopefully your bro will get motivated to join.

                            Best of luck!
                            "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.

                            Comment


                            • #15
                              My god Robert2112 you are an inspiration to all. I guess you either surrender or fight with all you got and thank god you chose to fight, I for one am glad, because you have know idea how you have helped me. (cryin right now) what a sap
                              Anyways, not sure if you read my other posts, but my brother had a girlfriend for 3 yrs. (she has a now 6 yr old from a previous relationship) They lived together for almost that 3 yrs. He had a ring and was planning on marrying her, when she called it quits, he was beyond himself, and that little boy he loved like his own. (he loves kids) But when she called it off, he tried to commit suicide, I thought that was the low of our family, it just keeps getting lower. Anyways, if he would try to do something so stupid over a girl that doesn't deserve or want him, can you imagine what this cancer is doing to him. So he too lost the girl, lost the house, he had no insurance in the beginning, so he payed for everything. (we had a benefit for him and raised $5,000, last summer, so that helped. But just when you think things can't get worse for him, they do, his car just broke down last week. We just laughed. Bottom line, LIFE is most important, and he hasn't gotton that yet.All the other things in time will be fixed. He was with my cousin, who is 26 and confined to a wheel chair (has been since birth CP) and when I was with my brother yesterday, he said it humbled him. So hopefully he's on the right track, he had his port and cat scan done yesterday, and on Fri. we view results and plan chemo for jan. 22nd, I think that if the cat scan is clear, that will give him that little hope, and he will fight, like you and prevail like you.
                              Krista
                              Brother Diag. 10/05 Non-Sem.
                              Right I/O 11/05
                              Surv
                              4XBEP 8/06
                              RPLND 12/06
                              2X VIP 1/22/07
                              Only completed 1 Rd.

                              Comment

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