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Thread: Lymphoma - Extremely Worry

  1. #1
    Newbie New User
    Join Date
    Aug 2018

    Lymphoma - Extremely Worry

    To preface: I want to say that browsing these forums really changed my outlook on life. It's amazing to see so many brave, selfless people comforting each other in such tough challenges. I honestly have no words at some of the posts here and feel a bit selfish posting in the worried section of this forum.

    However after weeks of worrying and lurking the web, I'm probably going through the worst period of my life to date.
    Story/worry (mid 40s male):

    GP refers to ultrasound. Ultrasound showed a few lymph nodes in neck over 3cm (apparently everything over 1cm is abnormal). GP issued a referral for a needle biopsy (not sure when appointment will be yet). Meanwhile blood tests are fine.

    Not showing any B-symptoms (night sweats, fatigue, itchiness etc). No infection/fever/sickness in the last 12 months+ which is what is making me worrying even more on why lymphs are so enlarged.

    I understand what seems to be common from a few popular posters on these forums that you are not dx'd with lymphoma/cancer until a pathology report comes in, but I am having severe stress coping with this possible lymphoma case. Never experienced health anxiety or any other severe anxiety as this ever in my life.

    Thank you for taking the time to read this story.

  2. #2
    Moderator Top User
    Join Date
    Mar 2010
    Hi, as you have read all the other posts, then you know the is little we can say or advise, the tests are what they are and until you get the results then at present the is no obvious answer for your raised nodes. You need to develop a strategy to keep your anxiety in check, possible tools are no more research until you know whats what, keep occupied so you don't have time to dwell on negative thoughts. Doing this is really important as most people in your situation don't get a lymphoma diagnosis, the number of worried posts back that up, but what the anxiety leaves them with is much more serious, people no longer trust what doctors tell them because they have convinced themselves that they have lymphoma and no words will convince them they don't.
    Think about that and how you will cope, seek help now and talk to your GP.
    2 other bits of advice, sometimes the are no answers as to why nodes are raised, often they are just doing what they do and secondly, fine needle biopsies are not reliable and I don't say that to worry you further, you need to understand they may need to do further tests to determine if its lymphoma or not.

    If it should be lymphoma then most respond well to treatment and blood cancers are not like solid tumour cancers.

    So take things a step at a time and stop getting ahead of things

    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  3. #3
    Newbie New User
    Join Date
    Aug 2018
    Thanks for the response, really appreciate.

    Although mentally feeling like preparing for C word as none of the other diagnosis by Mr/Dr Google fit the symptoms, especially in absence of a fever/illness or infection in over 12 months which would possibly explain extremely large 3cm+ lymph nodes in neck. And then I also read a study that said a lot of cases taken to biopsy end up being malignancy related.

    So afraid, can't unread what I've read now anyways. Trying best to stay off Google and being hopeful but its difficult..
    Last edited by biggestlove; 08-10-2018 at 09:11 PM. Reason: clarification/spelling

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    1. Deal with your anxiety, or your life will continue to be miserable.
    2. Want to read? Look up Cognitive Behavioral Therapy.
    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.

  5. #5
    Moderator Top User
    Join Date
    Mar 2010
    We see answers like this all the time, no you cannot unread what you have, but you can rationalise it, why should you be one of the few that has lymphoma, to get to a biopsy often people have had a CT or PET scan as you have to know where best to take the biopsy from. The are many things that immune system deal with that the medical world have yet to identify, the are many occasions the are no answers as I said earlier.

    As Po has said do you want to be a worrier or enjoy life? I know which I would chose
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.


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