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Thread: New Lymphoma Check-Up Timeline and Question about post-treatment symptoms

  1. #1
    Regular User TDM1986's Avatar
    Join Date
    Jan 2012
    New York State

    New Lymphoma Check-Up Timeline and Question about post-treatment symptoms

    Hi All,

    My husband Dan (as you may remember, now 27 yrs old and been in remission since August 25) received clean scan results again on February 15th.

    The dr. told us that instead of having a CT scan every 3 months for 2 years then every 6 months for 3 years and then 1 Chest XRay a year after that for life, it will change to a CT scan every 6 months for 2 years and then a chest x-ray every year after that. New research shows that long exposure to the radiation is not good and that if he relapses he will know since it will be worse, therefore, there is no sense in doing the continuous scans. Has anyone else been told this? What are your thoughts?

    Also, ever since completing his 4 cycles of ABVD and 15 radiation sessions, Dan has been sweating a lot... I will be cold and he is sweating, its 30 degrees out and he wants to wear short sleeves under a light jacket because he gets so warm. I talked to the DR and they said its probably from the chemo. Does anyone else experience the same thing?



  2. #2
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    NSW Australia
    Hello. I am nearly 3 years in remission and had 6 monthly scans and bloods and I have now gone to yearly.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Pacific NW, USA
    Great news about his clean scans!

    One's body may do just about anything after the assault of chemotherapy. Changes in perspiration are not unusual. I would suppose that, the worse the chemo, the worse the potential after effects. One other thing: since he had ABVD, he may have some lung problems - which is expected in many cases - so coughing may crop up. Known as "bleo-lung", it is from the Bleomycin that is the "B" in the ABVD chemo regimen. A cough while showering or in high humidity might be one symptom of this. Any cough is worth having doctor having a listen, though.

    As to scans, the younger one is, the more potential the radiation has for causing harm. Thus, less frequent scanning is always better. As well, any relapse will produce symptoms that you or he will notice. I have received head-to-pelvis scan series each and every 2 months since July, 2008. That has only recently dropped to every three months. I have asked doctor about a further decrease, but I am in a study and rules are rules.

    As to getting back to normal, well, we cannot go back. We must accept our changed (damaged) state and move forward, happy to be alive.
    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 TREC (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.
    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 measureable - 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.
    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.
    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 of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Two lymphoid malignancies plus a myeloid malignancy lend a certain symmetry to the journey.

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

  4. #4
    Regular User TDM1986's Avatar
    Join Date
    Jan 2012
    New York State
    Thank you so much for the information. I appreciate the feedback. I noticed he does cough once and a while, I will pay attention to when it happens and his current surroundings. I guess it depends on the person then for the scans. Thanks for all of the advice!!

  5. #5
    Regular User
    Join Date
    Feb 2013
    Buffalo New York area
    CT scan schedule after remission.....

    I had my clean PET after the last chemo and was told "quarterly for 2 years", then "semiannually for 3 years" and then once a year for life.

    That same radiation report came out during that first year and my schedule was altered to 2 years of triannual CT's and then 3 years of semiannual CT's and then after 5 years, once a year.

    Seems to have worked out okay so far, just had another clean scan!

    Upstate New York, USA
    @ age 60, Aug 2011, Dx w/ Diffuse Large B Cell Lymphoma, stage 2, near diaphragm
    6 R-CHOP and Neulasta
    Clean remission PET Dec 2011
    Medi-port removed Jan 2013 (Yeah!)
    Last clean scan Mar 2013
    Next scheduled CAT scan for Mid July 2013
    Upstate New York, USA
    @ age 60, Aug 2011, Dx w/ Diffuse Large B Cell Lymphoma, stage 2, near diaphragm
    6X R-CHOP and Neulasta
    Clean remission PET Dec 2011, whoop whoop!
    Medi-port removed Jan 2013
    Last clean CT scan July 2015, on a 2X year schedule
    BUT Onc just told me: "let's do just one time a year!"
    Yippee, next CT in July 2016. Feeling awfully good about it all........


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