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  • Neuropathy relief?

    Hello everyone. This board has been incredibly helpful on this journey - thank you! My husband is about 4 months post-chemo now (4xEP) and things are mostly good. The only issue right now is the continuing neuropathy, which in fact is getting worse (which the hospital warned us might happen). If you had ongoing neuropathy, was there anything you successfully did to relieve the symptoms? Anything you would advise trying? Thanks.

  • #2
    I'd like to know this too, I'm about the same, 4 months post-chemo (4xEP) and dealing with increased neuropathy in my hands and feet, mainly my left foot and slightly less in my left hand. It's gotten slightly worse since about month 3, and I didn't have any neuropathy during chemo.

    Did your husband have neuropathy during chemo or only after?
    March/April 2018 - Started feeling tightness in right abdomen
    6/4/18 - US+CT confirm massive tumor in right retroperitoneum (25cm x 18.7cm x 15.7cm)
    6/20/18 - Biopsy performed (suspecting sarcoma)
    6/25/18 - Diagnosed stage IIIC seminoma
    6/28/18 - Started 4xEP
    9/7/18- Finished 4xEP
    10/10/18 - PET Scan - (7.3cm x 4.6cm) max SUV 4.6 - Mostly clear!
    1/14/19 - PET Scan - (5.9cm x 2.9cm) max SUV 3.0 - All clear!

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    • #3
      dustumor99 he had it during chemo but it was pretty minimal. it's been getting progressively worse recently, both hands and both feet.

      Comment


      • #4
        This happened to me with 4xEP. It probably peaked at around 6 months post chemo I think? And then gradually went away. 3 years out I don't really notice it anymore unless I really think about it, and I have full dexterity back in my hands and feet. Cold and warm never really bothered them, but vibration did cause an annoying sensation.
        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: begin 4xEP, end 9/18/15
        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!
        9/27/18: all clears up to this date!

        Comment


        • #5
          I only have it in my fingers, some time worse than others, but always there.No pain, just numbness that started during BEPx3. It's still with me going on 9 years now. It's more annoying than anything. Handling small parts or even grabbing the tab on my fly can get frustrating.
          Last edited by Davepet; 01-08-19, 09:32 PM.
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

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          • #6
            I'm in a similar boat to Biwi, after my 3xBEP + 1xEP I found that the neuropathy in my feet and hands got worse and peaked a few months after chemo.

            I remember being worried about being able to jog and even type on a keyboard.

            Gradually though it did get better, I'm about 18 months post chemo and I only really notice it when I think about it.

            In terms of relief, I've read some people on this forum got temporary relief from acupuncture, as well as medication (unsure what types but Doctor could help).

            You may find it does improve with time.

            Comment


            • #7
              Yeah, I was a bit concerned at first, as I type at a keyboard a huge amount, and some of my work requires extremely fine dexterity (surface mount electronics). I distinctly remember at its worst my fly was sometimes tough, and holding and inserting tiny screws was difficult.
              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: begin 4xEP, end 9/18/15
              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!
              9/27/18: all clears up to this date!

              Comment


              • #8
                Peripheral neuropathy in pretty common after cisplatin-based chemotherapy, and wether it gets better or guys just adapt to it, they don't seem to have any lower health related quality of life. For the numbness and tingling there really are not any options for treatments unfortunately. However if it is painful, especially a burning pain, duloxetine, gabapentin and pregabalin are options that may be beneficial. Duloxetine has the best data although it is with patients that have had oxaliplatin and not cisplatin.

                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

                For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                Comment


                • #9
                  Peripheral neuropathy in pretty common after cisplatin-based chemotherapy, and wether it gets better or guys just adapt to it, they don't seem to have any lower health related quality of life. For the numbness and tingling there really are not any options for treatments unfortunately. However if it is painful, especially a burning pain, duloxetine, gabapentin and pregabalin are options that may be beneficial. Duloxetine has the best data although it is with patients that have had oxaliplatin and not cisplatin.

                  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

                  For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                  Comment


                  • #10
                    I will recommend my husband ask his doctor about acupuncture as well as the medicines you mentioned Mike. Thanks everyone!

                    Comment


                    • #11
                      Liquid magnesium and staying active. Best thing for me.

                      Comment


                      • #12
                        Liquid magnesium and staying active. Best thing for me. Seems to get better with time

                        Comment


                        • #13
                          Hi, my husband is almost three years post-chemo. He had 4 x BEP back in 2016 and suffered debilitating neuropathy pain in his feet afterwards. He had some finger numbness that mostly recovered, but his feet didn't get better. He tried gabapentin and another med (can't remember the name) without much improvement and all we could do was to get orthotic shoes that helped minimally. Last year, I asked my local community, trying to see if anyone else had similar pains to try and find a specialist... and two people recommended acupuncture. One lady's mother had chemo-induced neuropathy and specifically recommended someone to try, so we did. We had never tried alternative therapy before (and we're Chinese Americans ), but my husband felt a huge improvement even after his first session. He continued to go weekly for three months, until the improvements diminished but said that it's at least 90% improved... and continued to improve even after he stopped therapy. The lady we went to has been in practice for 50 years and specializes in pain, so she really helped my husband. I don't know if acupuncture would help all cases of neuropathy, but it's worth trying if you can find a good practitioner.
                          Last edited by juyuhu; 02-07-19, 01:42 PM.

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                          • #14
                            I didn’t have any real neuropathy issues after BEPx3 but I was warned about it and did acupuncture before and after to try and minimize it. Not sure if it it worked or if I just didn’t get it but I don’t have those isssues. My gut feeling tells me that a healthy diet and exercise should be done for a month or 2 and see if the condition improves. I would try and be a robot for a few months. Same thing everyday at the same time. Gotta start with a baseline. Wishing you the best.

                            Comment


                            • #15
                              The neuropathy tends to be a lot worse for EPx4 or BEPx4 patients who get the extra round of Cisplatin. It's the usual profile for the symptoms to be at their worst 4-6 months after treatments, and then should steadily improve until about a year or so out. I don't have good feeling in my finger tips, and still can't feel my left foot 8 years out, although the burning pain and shooting nerve pain has largely gone away. The worst thing about neuropathy for me was the chronic fatigue. I just had no energy for years, and really had to fight like hell with regular vigorous exercise to get it back. Regular exercise and staying active are probably the best things you can do for neuropathy related symptoms. I tried one of the prescription drugs, but the side effects were so bad that it made it worse than the relief it provided. Specifically running really helped with my shooting nerve pain issues for some reason. Numerous TC survivor friends of mine have sworn by acupuncture as well, so I believe that it can work for this too.
                              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!

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