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Thread: Muscle Pain Post Chemo?

  1. #1
    Newbie New User
    Join Date
    Nov 2019

    Question Muscle Pain Post Chemo?

    I'm currently in remission for Primary mediastinal large B-cell lymphoma and underwent a chemo regiment that involved staying in the hospital for 96 hours of continuous chemo. During that time I developed leg pains that were so bad I couldn't walk and was put on oxycodone and often given morphine. At the time my docs kept attributing it too the neulasta shot. However I am now 2 months post chemo and the pain has not stopped and I still have difficulty walking and standing.

    I had an appointment with my oncologists a few days ago and they insisted that it wasn't chemo related and was "probably just cramps", and that if I was really worried about them I could see my PCP about physical therapy. It felt extremely dismissive seeing as these were the same pains they had seen me put on morphine for and stuck in a wheel chair because of not even 2 months before.

    After doing some frustration based googling (I know, I know), I ran across a few sites saying that Vincristine can cause muscle pains which can last months after chemo ends. This seemed like a possible answer to my problems since I also had lasting neuropathy from vincristine.

    While I understand that if it's not cancer my oncologists ability to do something is limited, and PT inevitably part the solution, but I need a more concrete answer on what this is. Especially because I'm on Long Term Disability with my job and "chemo related pain" sounds a lot more valid on paperwork then "mystery leg pains".

    So I was wondering if anyone else here had lasting muscle issues post chemo, especially resulting from vincristine. I will be starting PT. But still I want to know if other people have had this same issue so when I go back to talk to them again I don't just seem like some crazy lady who googled her symptoms, and more like someone who has reached out to multiple people and built a case. Which both my job and my piece of mind depend on.

    Also When I say I've reached out to other people I am also talking to other Docs who administer chemo. Not just fourms. But because my oncologists signed my LTD paperwork in the first place so they're the ones who get to decided if this is chemo related or 'just cramps' or something else entirely when presenting my case.
    Last edited by Rorke; 11-01-2019 at 08:29 PM.

  2. #2
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Hello Rorke

    Sorry to hear of your continued challenges post chemo. I have moved your thread here to our Lymphoma forum as it has members that can provide responses to you in particular to your diagnosis and difficulties as our Cancer Pain forum is not very active.


  3. #3
    Senior User
    Join Date
    Mar 2017
    Hello Rorke,

    Into the first couple of lines or your original post, I felt quite certain that this was related to Vincristine.

    From what you say about both your pathology and regimen, I assume it was R-EPOCH, which does include Vincristine. This is well-known for causing neuropathy, aka nerve damage (don't know about nephropathy, though…).

    Now, of course, I am not a medical Professional - only a patient like yourself. There is no way I can tell for sure what it is that is causing your particular symptoms. What I can say though, is that in my case Vincristine caused such neuropathy that I only got one dose, and it was taken out of my chemotherapy regimen (R-CHOP, which is a slightly less harsh version of R-EPOCH) after that initial dose.

    Physical therapy does help - but you need time. You do not recover instantly from such an ordeal. I am over three years, not two months, out of chemotherapy and still working on recovering.

    What I would suggest, if you haven't already done that, is to ask for an appointment with the pain management specialist at the facility where you have received treatment. They are more likely to understand what is going on and to offer possible solutions to what you are experiencing.

    It may also help to keep in mind that the disease you had required aggressive treatment to give you extra years on this planet - and that extra time comes at a cost…

    I hope this answers some of your questions.

    Kind regards,

    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  4. #4
    Experienced User
    Join Date
    Apr 2019
    Just completed six cycles of CHOP, which included vincristine, and then a stem cell transplant. During CHOP I had a lot of muscle cramping, particularly at night. I started to wear compression socks during the day which eliminated the night time cramping. The chemo for transplant did not have the same effect. I did not have cramping during transplant. Vincristine also seemed to have an immediate and lingering effect on my gait as I lost the ability to flex my feet and wiggle my toes. The ability to move my toes is slowly returning now that it is almost 5 months after the last CHOP cycle. Hopefully this will continue to improve. Again, transplant chemo did not regress this ability. While I would get muscle cramping, I did not have continuous pain.
    63 years old.
    21 Jan 19 - Victorious Bikram 90 Min Hot Yoga!
    22 Jan 19 - Referred to ER for potential appendicitis, CT w/ contrast was negative for appendicitis but was informed I should see an oncologist ASAP, amused & annoyed
    25 Jan 19 - First visit with oncologist - first words, " I fear we are dealing with a serious form of Lymphoma, some which is not curable", PET Scan and Biopsy ordered, in denial
    14 Feb 19 - "B" symptoms debilitating, on Morphine top off with Extra Strength Tylenol, no longer in denial
    15 Feb 19 - Diagnosed Acute AITL - Stage 3B, 6 cycles CHOP and Auto SCT immediately following recommended, in shock
    01 Mar 19 - First CHOP cycle on way to SCT, resolved to see this thing through!
    19 Jun 19 - Last CHOP cycle
    03 Jul 19 - Scheduled for Transplant
    05 Aug 19 - Transplant deferred, lung surgery to remove growing nodule
    29 Aug 19 - Re-scheduled for Transplant
    23 Sep 19 - Admitted for Auto Transplant
    12 Oct 19 - Discharged from Transplant to home recovery

  5. #5
    Newbie New User
    Join Date
    Nov 2019
    Thank you Lisa, I'm new here and wasn't sure where to post.

  6. #6
    Newbie New User
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    Nov 2019
    It was R-EPOCH and I was part of a study that added an additional drug as well, and at first I was unsure if it was cause of the study drug but the more I read about the Vincristine the more I was sure that's what was causing it.

    I'm 28 years old and prior to my diagnosis I was in shape. Regularly ran 5 miles. Worked a warehouse jobs where I lifted 50lbs a day.I was prior to chemo very active and healthy. And the thing my oncologists kept saying was because I was other wise young and healthy I would rebound quickly, and it just feels like they made up their mind about that and don't want to believe it's anything cancer or chemo related.

    I fortunately received chemo at a hospital with a large cancer center and lots of resources so I'll look in to a pain management specialist, I was also thinking of trying to meet with the cancer center PT for their opinion.
    Last edited by Rorke; 11-02-2019 at 02:22 AM.

  7. #7
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    I had muscular neuralgia years after completing CHOEP-14. I was receiving a biological drug in clinical trial and it may have been an emerging side effect. You are young, which means resilient. Give it time. You were in a fight for your life. The drugs given to you, if improperly dosed, could easily have killed you. Chemo-induced neuropathy tends to resolve. Mine did very slowly, but I was in my mid-50s at the time.

    However, look at this like walking in fresh concrete: you leave tracks going in and coming back out. In many medical treatments, there is pain both going in as well as coming back out, as the same "territory" is being trespassed upon.
    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.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    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.

  8. #8
    Newbie New User
    Join Date
    Dec 2019
    Hi Rorke,
    I myself had some issues after treatment with vincristine. Interestingly enough we have the same cancer too. My first series of treatment sounds similar too;R-EPOCH over the course of four days every three weeks for five months. My main troubles occurred after the first treatment. My body was overall feeling painful, but the main issue for me was excruciating jaw pain and bad headaches. I was given pain medication for this and it at least dulled the issue. It was only bad for the first two treatments though, and after chemo, my body felt normal aside from being noticeably weaker. I also received the neulasta shot after every round and that caused a lot of aches and pains all over, but primarily in the legs. The neulasta issues only lasted for 3-5 days though. Were you advised to take clariton at all to help with the bone pain? I know that might sound silly if you weren't told to take it, but I did and that made a world of difference.

    One thing worth considering might be your age and general state of health when your treatment began. I'm of course not asking you to disclose that here, but I was diagnosed at 21 and was relatively fit at the time so my body may have been able to manage it better. Also if you were on pain killers for a long time, that could also have a residual effect. I was only given morphine once and then low dose percocet for 3 more treatments. After stopping the pain meds I had rough headaches for a month or so, but those eventually wore off. So as far as lasting muscle pain goes, I can't say that I've had the same issues, but I have had a lot of muscle deterioriation since the time of diagonise. I assume that's more from being bedridden and inactive for so long though too. Have you had any luck finding more information on why the pain is lasting for you? One thing I've learned through my experience with cancer is that even the best oncologists only possess a broad spectrum amount of knowledge on what chemo will do to each individual's body during and after the treatment.


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