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  • Post rplnd leg pain

    Hello all,
    This is my first post here but I have been following ever since my son Drew age 24 was diagnosed July 2017. The information here has been invaluable! Thank you all so much! It was here that I found out about IU. We are in AL and have seen 2 urologists and 1 oncologist and IU was NEVER mentioned. Drew is now 3 weeks post rplnd at IU. He was doing great the first week and a half. He was off pain meds other than tylenol &/or ibuprofin occassionally. He then developed SEVERE left leg and knee pain. He did have some leg and joint pain before surgery that his oncologist diagnosed as post chemo arthritis. He is being followed up locally with his oncologist because we like him best of the three docs we've seen here. Last week, his oncologist prescribed a very low dose gabapentin and a follow up CT of the leg and MRI of the lower spine to be performed today. He is back up to taking pain meds every 3 hours and the gabapentin as well with little to no relief. The pain is RELLY taking a toll on his resolve. He is not a stranger to pain at all. As you can see from my signature, he is a skateboarder and has continued to skate all through the orchiectomy and chemo. He also fought back from a severe traumatic head injury when he was 12 learning to walk and eventually skate again. I have seen a few posts regarding leg pain after rplnd but most comments stated that it was annoying or moderate. I fear that this pain is hindering his surgery recovery because he can barely walk to the bathroom much less anything else. The first week he was up and moving MUCH more. I will post later of the CT and MRI results. Thank you again everyone for your posts and comments!
    Son, Drew-24
    Traumatic brain injury age 12-disabled (not TC related but pertinent to why I'm all in his biz lol)
    4/5/17 Felt testicular pain & swelling
    5/10/17 Told me-called for Dr. appt.
    7/28/17!!! Dr. appt. set
    7/27/17 Went to ER. Increased pain spreading to back & abdomen. Ultrasound & bloodwork-"Looks like a tumor".
    7/28/17 L I/O
    7/31/17 Abd/pelvic/chest CT-Stage 3A
    8/17/17 Port placement
    8/21-11/2/17 BEP X3
    1/25/18 Open bilateral RPLND @ IU- NED (R nerve spared/ L nerve not so lucky)

  • #2
    Have you reported this to his RPLND surgeon? RPLND's definitely can irritate the nerve bundles that transfer feel/pain from your legs up to your brain.

    Can he describe the pain? Does it feel like nerve pain (tingles, hotness, sharp cutting, pins and needles)? or like bruise/impact/dull pain? Exactly where? knee pain seems odd, but temporary pain around the inner or outer thighs certainly can be a result of RPLND.
    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!
    3/29/2018 all clears up to this date!

    Comment


    • #3
      Thank you for responding, biwi. I have not called the rplnd surgeon. I am under the impression that there isn't much they will be able to do unless we were to travel back to IU. They were unable to save the nerve on the left side and it's the left leg/knee that is hurting so badly. Due to the previous brain injury, Drew struggles with verbal communication especially when he is under stress.It seems to be a constant dull, aching pain that he manages with, but also several times a day and night sharp shooting pain that he cannot manage. The pain is in his inner and outer thigh but also around the kneecap and behind the knee. If it is nerve pain caused from the surgery, maybe a higher dose of gabapentin would help. His CT and MRI were today. Hopefully they will provide some information to help him. I know my son and he would be up and out of here if his leg would let him.

      ps, How does everyone create their signature stats?
      Son, Drew-24
      Traumatic brain injury age 12-disabled (not TC related but pertinent to why I'm all in his biz lol)
      4/5/17 Felt testicular pain & swelling
      5/10/17 Told me-called for Dr. appt.
      7/28/17!!! Dr. appt. set
      7/27/17 Went to ER. Increased pain spreading to back & abdomen. Ultrasound & bloodwork-"Looks like a tumor".
      7/28/17 L I/O
      7/31/17 Abd/pelvic/chest CT-Stage 3A
      8/17/17 Port placement
      8/21-11/2/17 BEP X3
      1/25/18 Open bilateral RPLND @ IU- NED (R nerve spared/ L nerve not so lucky)

      Comment


      • #4
        Hi Sk8rMom,
        I'm sorry to hear that Drew is experiencing pain.
        I'm very new here, and don't know a thing about RPLND.
        But, as far as the signatures go, click on your name in the upper right and go to "User Settings", then "Account", then about half-way down the page you'll see a link for "Edit Post Signature".

        Good luck with Drew's pain relief and recovery!
        Painless lump 5/18/2017
        Orchidectomy June 2017 (4.5cm, rete testis involvement)
        Chemo Summer 2017 (2x7AUC carboplatin)
        No evidence of relapse since, but plenty of anxiety about it.

        I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

        Comment


        • #5
          Thanks, billandtuna! I'll give it a go with the next update.
          Son, Drew-24
          Traumatic brain injury age 12-disabled (not TC related but pertinent to why I'm all in his biz lol)
          4/5/17 Felt testicular pain & swelling
          5/10/17 Told me-called for Dr. appt.
          7/28/17!!! Dr. appt. set
          7/27/17 Went to ER. Increased pain spreading to back & abdomen. Ultrasound & bloodwork-"Looks like a tumor".
          7/28/17 L I/O
          7/31/17 Abd/pelvic/chest CT-Stage 3A
          8/17/17 Port placement
          8/21-11/2/17 BEP X3
          1/25/18 Open bilateral RPLND @ IU- NED (R nerve spared/ L nerve not so lucky)

          Comment


          • #6
            I would definitely reach out to the RPLND surgeon at IU as they are most aware of any complication that may have arisen from his procedure. I am also not sure that low dose gabapentin is very effective here. If it was chemotherapy related due to peripheral neuropathy and is a more of a burning pain (vs a dull pain/tingling) then perhaps duloxetine, gabapentin or pregabalin might be options to discuss with the doctor. However, with it being more in relation with the RPLND when I would just call up to IU. You should have imaging results that IU can request if needed too. I wound't think that they would make you travel back up but of course that depends on the surgeon I suppose.

            MIke
            Oct. 2005 felt lump but waited over 7 months.
            06.15.06 "You have Cancer"
            06.26.06 Left I/O
            06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
            06.30.06 It's Official - Stage I Seminoma
            Surveillance...
            Founded the Testicular Cancer Society
            6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

            Comment


            • #7
              I agree with Mike, the docs up at IU are your best bet. They have more experience with RPLND & it'spossible complications.

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

              Comment


              • #8
                So sorry about your son's residual pain post RPLND. Did you check out thread from TC MOM here? If not please do as her son had some post RPLND issues that sound similar. Just check her post was 11/28/17.
                Please keep us updated.
                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


                • #9
                  Thank you, Trekga. I read TC MOM's post a week or so ago and tried to find it again but couldn't. I couldn't remember her user name. I'll check again. I called the surgeon's office at IU and told them what medication and tests were being prescribed locally. They said the leg and (rarely) knee pain is common and that the local doc was being very thorough but if our doc or I needed anything else or had any other questions feel free to call. The response was pretty much what I expected :/ The local doc upped the gabapentin at night to 300 mg. Maybe it's helping a little? Still waiting for the results of the last CT that was ordered. I'm afraid my boy is going to be glowing by the time this is over....
                  Son, Drew-24
                  Traumatic brain injury age 12-disabled (not TC related but pertinent to why I'm all in his biz lol)
                  4/5/17 Felt testicular pain & swelling
                  5/10/17 Told me-called for Dr. appt.
                  7/28/17!!! Dr. appt. set
                  7/27/17 Went to ER. Increased pain spreading to back & abdomen. Ultrasound & bloodwork-"Looks like a tumor".
                  7/28/17 L I/O
                  7/31/17 Abd/pelvic/chest CT-Stage 3A
                  8/17/17 Port placement
                  8/21-11/2/17 BEP X3
                  1/25/18 Open bilateral RPLND @ IU- NED (R nerve spared/ L nerve not so lucky)

                  Comment


                  • #10
                    All the CT & MRI results are back & are considered normal considering the effects of the surgery. He does have evidence of multiple seromas that they say are not unusual. Still no explanation of the leg pain other than "it's not unusual". It has eased some, thank God. He is now 4 weeks out & has reduced the narcotic pain meds to one at night. He has also reduced the gabapentin to only the nighttime 300 mg dose. He has been able to walk around the yard some & was able to ride in the car for a few quick errands. Things are looking much better. I wish I could get a better explanation about the cause of the leg pain but I may have to just let that go & celebrate the victories as they come 😆
                    Son, Drew-24
                    Traumatic brain injury age 12-disabled (not TC related but pertinent to why I'm all in his biz lol)
                    4/5/17 Felt testicular pain & swelling
                    5/10/17 Told me-called for Dr. appt.
                    7/28/17!!! Dr. appt. set
                    7/27/17 Went to ER. Increased pain spreading to back & abdomen. Ultrasound & bloodwork-"Looks like a tumor".
                    7/28/17 L I/O
                    7/31/17 Abd/pelvic/chest CT-Stage 3A
                    8/17/17 Port placement
                    8/21-11/2/17 BEP X3
                    1/25/18 Open bilateral RPLND @ IU- NED (R nerve spared/ L nerve not so lucky)

                    Comment

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