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Thread: Muscle twitching all over

  1. #1
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    Muscle twitching all over

    Hello:

    It's been awhile since I've posted. I hope everyone is doing well and/or coping well.

    I had stage 3A colon cancer and had a resection and chemo. My chemo included oxalyplatin (and finished in July 2017). For awhile I had numbness in my fingers and feet. The numbness in my fingers went away and I believe it is also reducing in my feet

    For the past 6 months, however, I have had small twitches all over my body. Sometimes it's more of a jerk or movement. Like my finger will move up and down by itself or my foot will also move slightly. They occur infrequently (some days once a half hour -- other days barely at all). I saw a neurologist and she did not think it was a problem; however, I am going to get a second opinion. The first appointment I could get was at the end of March which is frustrating. So I thought I would ask here if anyone had this. I was thinking it could have been the oxalyplatin which affects nerves.

    Thanks,
    Yasmine
    Last edited by Yasmine G; 01-12-2019 at 12:36 AM.

  2. #2
    Moderator Top User Doug K's Avatar
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    Yasmine, I have had the oxalyplatin, had numbness in my hands and feet, still do in my feet. They sort of tingle, similar to your foot being asleep, only all the time, when something touches. It is annoying, but not debilitating. My hands are worse when the weather is cold, like now!

    I hope someone posts here for you to help you get some support before March. Please post if/when you have more info.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    August 23, 2013 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    August-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
    Jan.6, 2014 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
    Sept. 4, 2014 ColonoscopyClear,CT Clear
    Dec. 2014 Follow up BlWk +,CEA .9
    Mar.2015Follow up BlWk +,CEA .6
    June 2015 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+
    Continue ColoRectal Support Group monthly

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of this. I have had such neurological problems my entire life. Twitching, some of it painful, but it is nothing outside of my nervous system. Are you stressed about anything? Life change, job change, stress over "possible" relapse? Still dealing with your initial diagnosis and everything that followed? Anything? It is always possible that the chemo contributed to this, but there may be an underlying cause in a basic stress level.
    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.
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    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
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    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.
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    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
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    DEXA scan reveals Osteoporosis.
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    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.
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    12/16 Type II Diabetes, Hypertension - both treatment-related.
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    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
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    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.
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  4. #4
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    Quote Originally Posted by Doug K View Post
    Yasmine, I have had the oxalyplatin, had numbness in my hands and feet, still do in my feet. They sort of tingle, similar to your foot being asleep, only all the time, when something touches. It is annoying, but not debilitating. My hands are worse when the weather is cold, like now!

    I hope someone posts here for you to help you get some support before March. Please post if/when you have more info.

    doug
    Thanks for the reply, Doug!

  5. #5
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    Hi - thanks for the reply.

    I hope it is just stress. I did move to a new city in August 2017 and started a new job but I did not notice the twitching until July of 2018. It's like you said but in my case not painful. It's really more annoying than anything else and I'm not happy it's on my face although I doubt it's really noticeable at least for now. The good thing is some days I don't have it. I'll see what the neurologist says.

  6. #6
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    Just wanted to add that at the time the twitching started last July it was right after some rapid weight loss. I had lost about 10 pounds in a few weeks. Since last July I lost 20 pounds in total (from 147lb to 127 lb). My current weight is more appropriate for my height. That's really the biggest change that happened. It makes me wonder if that had something to do with it. I haven't really changed my diet - just my appetite decreased for some reason which happened to me another time long before the cancer.

  7. #7
    Moderator Top User Doug K's Avatar
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    I get what you mean about it being annoying, I certainly feel that way about my feet. I don't know of the Oxi causing the movement, but I agree that is wouldn't be out of line with the nerve related sort of reaction. Good luck. The weight loss sounds good? I could use that sort of reaction. I seem to eat comfort foods, which seems automatic to go to my tummy!

    Stay tuned... and keep in touch.


    Quote Originally Posted by Yasmine G View Post
    Just wanted to add that at the time the twitching started last July it was right after some rapid weight loss. I had lost about 10 pounds in a few weeks. Since last July I lost 20 pounds in total (from 147lb to 127 lb). My current weight is more appropriate for my height. That's really the biggest change that happened. It makes me wonder if that had something to do with it. I haven't really changed my diet - just my appetite decreased for some reason which happened to me another time long before the cancer.
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    August 23, 2013 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    August-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
    Jan.6, 2014 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
    Sept. 4, 2014 ColonoscopyClear,CT Clear
    Dec. 2014 Follow up BlWk +,CEA .9
    Mar.2015Follow up BlWk +,CEA .6
    June 2015 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+
    Continue ColoRectal Support Group monthly

  8. #8
    Super Moderator Top User po18guy's Avatar
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    Just a suggestion: try something like a vitamin B-100 supplement. B vitamins are given as injections in some nations for nerve conditions such as Bell's palsy. DW had noticeable Bell's palsy and was given facial muscle exercises. In her native El Salvador, she received substantial injections of B-vitamins and the condition resolved and has not returned. In any case our body excretes what B vitamins it doesn't use.
    Last edited by po18guy; 01-13-2019 at 09:07 AM.

  9. #9
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    Quote Originally Posted by Doug K View Post
    I get what you mean about it being annoying, I certainly feel that way about my feet. I don't know of the Oxi causing the movement, but I agree that is wouldn't be out of line with the nerve related sort of reaction. Good luck. The weight loss sounds good? I could use that sort of reaction. I seem to eat comfort foods, which seems automatic to go to my tummy!

    Stay tuned... and keep in touch.
    Yes, appetite is a weird thing and seems to change on its own.

    Will do ...

  10. #10
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    Thanks - will ask my doctor about it.

 

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