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RPLND recovery help!

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  • RPLND recovery help!

    My boyfriend had his RPLND surgery almost four weeks ago and he doesn’t seem to be getting better. His surgery was 16 hours long and I know it’s a very invasive surgery but he can’t be on his feet longer than a minute or two before he feels like he is going to fall over. Due to not being able to eat fat he hasn’t been taking in enough calories and has lost a lot of weight. When he does eat he gets nauseous and starts burping a lot.

    I am sure it’s just his insides still healing after such a gruesome procedure but after 4 weeks I hoped he would have progressed farther in his recovery.

    Is anyone familiar with RPLND and how long did it take for you to recover? Is it normal for it to take this long to heal?

  • #2
    My fiancé had a 16 1/2 hour RPLND back in December. He was hospitalized for a few weeks then discharged to a rehab. He has never recovered 100%. I’d reach out to his urologist and oncologist. Perhaps he can have a visiting nurse or physical therapy at home to get him started.

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    • #3
      I can tell you that I had straightforward RPLND that lasted 5ish hours, but I only had one string of lymph nodes removed. My recovery was much quicker, I was eating regular diet and meals within a week or so. However, my RPLND was much less involved, so its hard to compare. 4 weeks definitely sounds too long to be able to handle normal foods though. I would contact the surgeon's office.
      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!
      9/27/2018 all clears up to this date!

      Comment


      • #4
        Originally posted by Bcerebe View Post
        My fiancé had a 16 1/2 hour RPLND back in December. He was hospitalized for a few weeks then discharged to a rehab. He has never recovered 100%. I’d reach out to his urologist and oncologist. Perhaps he can have a visiting nurse or physical therapy at home to get him started.
        How is he eating? My boyfriend was starting to get better but now every time he eats he gets really nauseous and has been dry heaving every other day.

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        • #5
          so sorry for your boyfriend. Where are you located? I would look into rehab if feasible. The not eating, is common post RPNLD- why they do not say more about it pre surgery I have no idea. But, my son actually lost a good bit of weight post RPNLD vs chemo. Maybe talk to his doctor about an anti acid?
          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.

          Comment


          • #6
            Originally posted by Junebug15 View Post
            How is he eating? My boyfriend was starting to get better but now every time he eats he gets really nauseous and has been dry heaving every other day.
            Sounds very similar. He also lost a kidney during RPLND and when he began dry heaving, he wasn’t urinating much and ended up hospitalized again due to dehydration. The only way to go to inpatient rehab with insurance is after at least a 3 day hospital stay but you can get a visiting nurse and therapy at home a few times a week. I wouldn’t wait much longer to contact his doctors just place a phone call and ask for them to call you back or if you have their nurse line.

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            • #7
              Sorry to hear your boyfriend is having a hard time recovering from his RPLND. Am I right in assuming his need for a fat free diet is because he has chylous ascites? I too had a few complications after my surgery and was kept in the hospital for over a month on a fat free liquid diet till the ascites healed. I also needed heavy antibiotics for peritonitis and pneumonia infections. After getting out I had severe nausea to the point of needing ondansetron to control it for about six weeks. In that time I basically lay on the couch as I was so weak. Then within a week the nausea stopped, I was able to eat more food which in turn strengthened me up and before I knew it I was up and about doing my normal activities once again.

              It is a major operation physically, mentally and emotionally. Give it time. He will recover. Probiotics and other gut friendly bacteria may help with digestion.

              Comment


              • #8
                I'm exactly 8 weeks out from my RPLND. It's still hell. I have chylous ascites and am still on as close to a 0 fat diet as possible. They've drained: 5.5, 6.5, 8.5, 8.5, 9.4, and 8.5 liters via paracentesis. They've done one surgery to fix the chylous ascites that didn't work, and another try is set for this week.

                I think I could walk around ok if it weren't for all that fluid in my belly. I don't get that nauseous, but I do recall a lot of burping early on that went away.

                My diet tips now: fat-free protein shakes. 0 fat deli turkey. Use MCT oil. I read somewhere that watermelon and mangoes are good.

                I'm finding youtube "guided meditations" to be helpful for relaxation and sleep.

                Wishing luck to you and your boyfriend. It's hard for others too.

                Comment


                • #9
                  Oh yeah, that fluid leakage would be very tough! I hope they can get it figured out and resolved!
                  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!
                  9/27/2018 all clears up to this date!

                  Comment


                  • #10
                    Thanks guys!

                    He’s able to be up a little bit more and can manage getting where he needs to in our small apartment by himself.

                    He hasn’t had chylous ascites but he was put on the diet to prevent it. He is officially able to eat whatever he wants now but we are finding that he still needs to not go crazy on the fatty foods.

                    It is now midnight in California and he woke me up because there is blood in his pee. I will contact his surgeon first thing in the morning but I am hoping it’s from the stents that we’re placed in his kidneys that haven’t been removed yet.

                    Comment


                    • #11
                      The RPLND is rough and recovery is no joke. In addition to probably being malnourished, he probably also has some muscle deconditioning. You really have to push yourself to do a little more each day after this surgery, no matter how hard. And small portions for food and whatever he can keep down will be needed for awhile. Keep foods very basic, like crackers or congee or something.
                      Young Adult Cancer Survivorship by Steve Pake
                      April is Testicular Cancer Awareness Month!
                      www.stevepake.com
                      Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
                      My Survivorship Thread | All of my Blogs
                      C
                      ONTACT ME ANYTIME!

                      Comment


                      • #12
                        OK, Junebug,
                        Hopefully by now you've been in contact with his doc & hes been checked out. What did they say about the blood in his pee? I'm no doc, but that doesn't sound like something to mess around with to me. It's also something I can't recall anyone mentioning on here before.

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

                        Comment


                        • #13
                          Originally posted by Davepet View Post
                          OK, Junebug,
                          Hopefully by now you've been in contact with his doc & hes been checked out. What did they say about the blood in his pee? I'm no doc, but that doesn't sound like something to mess around with to me. It's also something I can't recall anyone mentioning on here before.

                          Dave
                          Yeah they think it’s a UTI and want us to do a urine sample. We went today but he isn’t able to urinate enough. They are letting us collect the sample at home so I am hoping he has more luck when he wakes up in the morning.

                          He’s doing a lot better with eating and that in turn has been making him have more energy.

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