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Thread: Unbearable Night Sweats

  1. #1
    Newbie New User
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    Exclamation Unbearable Night Sweats

    I am nearly one full cycle through my chemo and i have been experiencing the most intense night sweats since i came out of hospital around 1 week ago. I am literally changing clothes and pillows on the hour or half hour from the moment i go to bed until around 4am when they cease. My temperature has been fine since i have been home and paracetemol or ibroprofen makes no difference. It is bizzare as i can sleep during the day and i do not sweat at all. It is directly at night and will begin the moment i close my eyes . I do not have lymphoma but i have a rare kind of seminoma which has appeared in my chest and lymph glands. I have spoken to my chemo sister who basically insinuates there is not much i can do for them. But i am desperate for a decent sleep and i have come on this forum as a last attempt to at least find someone who has experienced the same. Any advice would be more than welcome.

    Thank you.

    Jonathan

  2. #2
    Senior User
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    Hi Jonathan, I don't know anything about seminoma unfortunately. I did a quick google and it is a type of tumour/cancer that looks to be extremely curable, so this is good.

    I do, however, know a LOT about night sweats. The love of my life Rio had horrible ones prior to starting treatment. We would wake up drenched in his sweat. I stopped even bothering to wear pyjamas to bed because I knew I'd wake up in a few hours feeling like I was swimming in the bed. We changed the sheets in the middle of the night constantly. Chemo stopped his night sweats but it doesn't for everyone. Some people actually start getting night sweats during chemo, I think because of all the stress their body is under. Unfortunately, there wasn't anything we could do for Rio's sweats. We got a cooling pad for the mattress, and I got him a cooling pillow, but it honestly doesn't help. The only other thing I would say is to make sure your sheets are cotton - it absorbs better than other materials. We tried bamboo sheets because they're supposed to be more breathable. They were nice and soft but didn't help.

    I'm sorry, I wish I had some solutions. The good news is that your sweats shouldn't last much longer, I think - most people only have them for the first couple cycles if they are caused by the chemo and not by the disease. For the sleep, I really don't know. Rio slept fine with his because his fatigue was so severe, thanks to his cancer. Maybe you could speak to your team and see if you could get a sleep aide?
    Kirsten.
    Boyfriend Rio diagnosed NSHL 29th July 2014 (24 years old)
    Stage IVBSX (~15 cm primary tumour)
    eBEACOPP 30th July to 3rd December, 2014
    Post TX PET 12th January, 2015
    Results 20th January, 2015
    Complete metabolic response. Rio's remission has begun!

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Inasmuch as you do not have lymphoma, I have moved your thread to the "other cancers" forum. I would place a call to your doctor's office, as they would have more experience in this area. I had the typical lymphoma night sweats, but they disappeared rapidly once in treatment. It may be a matter of patience on your part, but I would call doctor first.
    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.

 

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