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Thread: arm and leg cramping from chemo OD

  1. #1
    Newbie New User BatGirl's Avatar
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    Question arm and leg cramping from chemo OD

    I had a cancer of the ileum surgically removed, then placed on chemo. On the 5th cycle of my chemo treatment I suspect they accidentally double dosed my oxaliplatin which seems to have hit me like a ton of bricks. The first four cycles of infusion went fine with an occasional mild and obscure one or two day issue (slight nausea, super sensitivity to cold, etc.) right after they unhook me from two day take home pump. I had my Zofran dosage upped from 4mg to 8mg on the second cycle to help with mild nausea. BUT this last time the process went rather erratic (couldn't find order, the oxaliplatin infusion lasted over twice as long, etc) and the next day while on the take home pump symptoms began to escalate beyond expected. Nausea no longer in check with Zofran, appetite which has been great went to zero, but the worrisome thing is the hand/wrist/forearm and lower leg/ankle/foot muscles are all taught and occasionally cramp-up. BTW - I also have MS, but can usually walk fine. Hard to walk with legs cramping, and using hands is difficult as grip is spasmodic. Been going on for five days so far. Worried my MS may relapse over this arm/leg thing.

    Anyone ever had this happen? Anyone got any ideas how to mitigate this problem?
    Last edited by BatGirl; 02-23-2019 at 02:13 PM. Reason: typo

  2. #2
    Moderator Top User Doug K's Avatar
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    BatGirl,

    Your treatment seems to have caused you problems. I would be sure to keep in touch with your Docs to update them on your responses. Sorry you have had this added complication. I don't know of anyone with your situation, but you are in the right place to post your concerns. I am sure if someone has had similar experience, they'll post back to you.

    I would take care to monitor my reaction to the treatment and communicate to my oncologist any changes and to keep them informed as to your progress. Keep your posts uptodate, please.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  3. #3
    Newbie New User BatGirl's Avatar
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    ... day 9

    Starting three days ago, muscles in my thighs and buttocks, and in my upper arm and shoulder, have become extremely sore and painful (who beat me up in my sleep?). Assume this is from my using them unnaturally when walking and handling things to compensate for the lower muscle stiffness? Would muscle relaxers help the rigid muscles (yep - still stiff, but slowly getting less...)? Hydrocodone doesn't help the painful muscles at all :-\

    Queasiness still there, and blows up into wave of full nausea once or twice a day (retching, dry heaving, etc.) - good news is appetite is coming back slowly :-}

    Postponed my next chemo for a week to let this crap subside....
    Last edited by BatGirl; 03-01-2019 at 06:15 AM.
    We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

  4. #4
    Moderator Top User Doug K's Avatar
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    Quote Originally Posted by BatGirl View Post
    Starting three days ago, muscles in my thighs and buttocks, and in my upper arm and shoulder, have become extremely sore and painful (who beat me up in my sleep?). Assume this is from my using them unnaturally when walking and handling things to compensate for the lower muscle stiffness? Would muscle relaxers help the rigid muscles (yep - still stiff, but slowly getting less...)? Hydrocodone doesn't help the painful muscles at all :-\

    Queasiness still there, and blows up into wave of full nausea once or twice a day (retching, dry heaving, etc.) - good news is appetite is coming back slowly :-}

    Postponed my next chemo for a week to let this crap subside....

    Hey there BatGirl,

    How are things? You getting any relief? I hope things are going better for you.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  5. #5
    Super Moderator Top User po18guy's Avatar
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    Just musing here. I also had cancer in my ileum. But, any and all small intestine cancers are extremely rare. There is much lymphoid tissue and lymph nodes in and around the ileum. Am wondering if it was a lymphoma, as mine was(?) If so, it sounds like the wrong meds are in use.

    You can ask for a copy of the pathology report as well as records of the various infusions you have had. They will reflect what has occurred. However, our reaction to chemotherapy is cumulative and progressive, so it may have just crossed that point on the day where things seemed to go so wrong.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  6. #6
    Hi Batgirl-

    Sorry to hear about your side effects. I too have had a pretty bad time with the oxaliplatin. I don’t have much for you regarding the cramping, it’s not my worst side effect of the bunch...I used an electric hand warmer a lot when I did cramp up. It wouldn’t stop the cramp but would help the pain quite a bit. If the cramping is purely from Oxaliplatin it might take the edge off. I did also want to let you know that they’ve included a steroid in my infusion since round 1 to prevent nausea and I have had ZERO nausea for my entire course (I just completed cycle 8 of 12). May be something to look into.

    Best -

    Amanda

  7. #7
    Newbie New User BatGirl's Avatar
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    adenocarcinoma

    Quote Originally Posted by po18guy View Post
    Just musing here. I also had cancer in my ileum. But, any and all small intestine cancers are extremely rare. There is much lymphoid tissue and lymph nodes in and around the ileum. Am wondering if it was a lymphoma, as mine was(?) If so, it sounds like the wrong meds are in use.
    The cancer attached to the interstitial space side of my Ileum was classified as an adenocarcinoma. 16 lymph nodes nearby were tested and all came up negative. It was classified as level 4 cancer and metastasized - lots of fluid in the interstitial space tested positive for cancer cells.

    Just got thru with chemo cycle #12 and will be 'coasting' for 30 days and then doing antigen test and CT scan to see if we beat it back, and then keep stepping along at 30 days doing antigen test... current Carcinoembryonic Antigen = 2.3ng/mL and last CT scan showed no growths...

    Meanwhile contending with numb feet/toes/heel with stiff lower leg muscles. Last two cycles the Oxaliplatin was deleted due to these symptoms - another reason to coast for a month is to let my body recover a bit from this onslaught... get some feeling/control back in my feet/legs. Hands also numb but were that way before the chemo due to my Multiple Sclerosis, so difficult to say if the Oxaliplatin added any numbness there...

    Will update as time goes by
    We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

  8. #8
    Newbie New User BatGirl's Avatar
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    Lhermitte's syndrome wanning...

    Feet (heel, toes, etc.) still quite numb yet getting slightly less, but the Lhermitte's syndrome 'electric shocks' in my feet when I bend my head forward has finally, after months, gone - 'replaced' by similar 'electric shocks' throughout my body that now only occur when I'm at rest, breathing shallow and 'pausing' a bit between breaths, and the 'electric shocks' seem to 'pulse' with my heartbeat for about 3-5 beats, then gone. Happens about 2-3 times a day. Annoying, but not painful and hardly noticeable.

    Now doing 6-week cycle of flushing the port and testing blood, with CT-Scan every 3 months. Mainly in a monitoring mode now - wait and see if the chemo killed the beastly cancer cells secreted by my adenocarcinoma before it was surgically removed, and see if it's beginning to make any comeback - I pray it will stay put down. Last CT-Scan shows no new growths (spot on liver shrunk 50% - possibly cyst) and Carcinoembryonic Antigen test still not moving higher than the 2.5 threshold.

    Still walk 1.0 km daily as exercise best treatment for feet numbness, that and time off of chemo
    We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

  9. #9
    Moderator Top User Doug K's Avatar
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    Quote Originally Posted by BatGirl View Post
    Feet (heel, toes, etc.) still quite numb yet getting slightly less, but the Lhermitte's syndrome 'electric shocks' in my feet when I bend my head forward has finally, after months, gone - 'replaced' by similar 'electric shocks' throughout my body that now only occur when I'm at rest, breathing shallow and 'pausing' a bit between breaths, and the 'electric shocks' seem to 'pulse' with my heartbeat for about 3-5 beats, then gone. Happens about 2-3 times a day. Annoying, but not painful and hardly noticeable.

    Now doing 6-week cycle of flushing the port and testing blood, with CT-Scan every 3 months. Mainly in a monitoring mode now - wait and see if the chemo killed the beastly cancer cells secreted by my adenocarcinoma before it was surgically removed, and see if it's beginning to make any comeback - I pray it will stay put down. Last CT-Scan shows no new growths (spot on liver shrunk 50% - possibly cyst) and Carcinoembryonic Antigen test still not moving higher than the 2.5 threshold.

    Still walk 1.0 km daily as exercise best treatment for feet numbness, that and time off of chemo
    Good to hear from you BG. You seem to be on top of the symptoms and side effects from treatment. I still have neuropathy in my feet, I walk nearly daily and I guess the highlight is when I am done and take my shoes and socks off. I wish that numbness and "shockiness" would just go away.

    Good luck to you and keep coming back.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

 

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