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Spinal pain and neurologic issues after chemo?

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  • Spinal pain and neurologic issues after chemo?

    i hope i can find somebody else with similar issues. I haven't seen any forum like this so i am pessimistic and i fear im in HUGE trouble (leptomeningeal mets maybe).
    i was diagnosed with yolk sac tumor in august, AFP peak was 5K. Lymph mets, no met in brain, lungs or liver.
    I had 4BEP + RPLN from August, my markers normalised, rplnd showed necrosis in the lymph node conglomerate. So i should be happy but i am not because since the second round (september) i have _constant_ upper back (spinal) pain. My stooling changed a lot (no incontinecy but its totally different and never looks normal). I also have fasciculations (even in trunk) and tinnitus since December. All these points to a spinal cord tumor so i forced for severals MRI -s with contrast - nothing found. I had now a spinal tap - also came back negative today.

    The doctors have 2 theories:
    1)its because of the chemo. I think its BS as nobody else had this, nothing found in literature.
    2) They claim it could be psychosomatic. Well, i know myself and i am not that type (ok, every hhypochonder would say that but pls trust me on this)I also do not believe that emotional / mental issues could cause constant !! spinal pain regardless of my posture. im clearly suffering.

    My theory is spinal leptomeningeal mets which is hard to detect and the diagnosis requires a high level of suspicion which my doctors clearly lack.

    Did anybody notice anything similar ... ? i doubt but pls share your views.

    thanks for reading ....


  • #2
    the worst part is that I had all kinds of treatment that I handled well, i was not sick at all during chemo (not even on the 4th round), was walking 2 days after RPLND, but my body is hacked and i can only pray its not from cancer


    • #3
      not many people being able to relate to, right? that's the problem, these are not normal complaints with testicular cancer and BEP. I think i need a second spinal tap


      • #4
        Hey Sanis,

        1) Did your doctors gave you some analgesics ? If so, how did you respond ?

        2) Are you followed in a TC center of excellence ?

        December 15, 2015 : Right I/O. Markers normal.
        December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
        January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
        February 2016 : Markers normal.
        March 2016 : Markers normal.
        April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
        April 25, 2016 : Happy birthday ! Relapsed confirmed.
        May 2, 2016 : BEP x 3 begins.
        July 3, 2016 : BEP x 3 ends.
        July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
        December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.
        June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.


        • #5
          hey Jean- Philippe

          - yes, i tried a few without much success. What helps a bit is Gabapentin

          - yes, i am, even though its no MDA or Indiana.


          • #6
            When did you finish your chemo? What is your age?

            Tinnitus is a well known side effect of cisplaten.

            I'd never heard of fasciculations, but discovered I get them from time to time, never paid much attention, though:

            Also never heard of spinal leptomeningeal mets, but that seems pretty unlikely after 4xBEP:

            Keep in mind that back pain is extremely common and more often than not is not caused by cancer. In your case after a clean MRI & lumbar puncture I'd be looking for other causes for the pain, JMHO

            Last edited by Davepet; 02-14-17, 11:56 PM.
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP


            • #7
              hi Davepet

              thanks for your feedback and links.

              im 30 and never had any back pain. Reason why im concerned about it is that any "normal" condition causing constant back pain should be visible on an MRI (hern disc, bulged disc, whatever). I have had blood tests, Lyme test, b12 test etc. my kidney is also fine.

              I have been seeing spine surgeons, neurologists, oncologists - nobody knows why im having these symptoms and im getting more and more afraid its from cancer. the problem is that some of my symptoms can easily be from chemo: tinnitus, stool changes (fatty liver), even fasciculations and tingling.

              CSF (spinal fluid) is not really reached by standard chemoterapy so 4 BEP does not count much

              Re MRI and spinal tap: 10-20% of the peope with lept mets never get diagnosed due to false negative results. I just hope i can't be that unlucky, it would be already extreme with TC. i just feel like a mess without a diagnosis but im still looking for other reasons...



              • #8
                and finished chemo end of October, first symptoms occurred after first round of chemo.


                • #9
                  Hello All!
                  My symtoms stayed with me but my AFP 10 months after the end of chemo (is it the way i should count when my first year ends?starting after the end of the chemo?) is still normal (3 months ago it was 3, now 4). I have mild neuro symptoms and back pain. By now i start to believe that it is not caused by cancer...


                  • #10
                    Thanks for updating us. Sorry you still have back pain. I think some people have back pain before, during, after chemo.
                    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.