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Thread: New to this....

  1. #1
    Newbie New User
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    New to this....

    Iím new to forums and reaching out for support. I normally try to maintain a positive outlook but Iím finding myself falling short lately.

    I completed treatment for stage 4 DLBC NHL just over a year ago. As of March Iím in remission. Last week I started to feel a lump in my throat again and it really has me freaked out. I reached out to my oncology team.

    I donít know if the fear and anxiety will ever go away but I was wondering if any other warriors out there wouldnít mind helping to ease my mind

    Thanks
    Sam

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear this Sam. The thought of a relapse may never go away, as the memory of traumatic incidents tends to remain with us. Lymphoma is unique among cancers for several reasons, one of which is that our lymph nodes react and expand as part of their daily existence. Some of us are tempted to check for nodes and this is a double-edged sword. It is good on the pro-active side of the ledger, but bad on the anxiety side.

    You have done well to contact your medical team, as they will be able to address your concerns. Last month, my hematologist palpated several sub-mandibular nodes which were about 1.5 cm, but neither she nor was worried, as I was fighting a virus at the time. Speaking of which, a lump in the throat is concerning if that is where your DLBCL was located. But then again, not so much, as 2019 has been one heck of a year for colds and viruses.

    I am fighting virus #6 or #7 for this year, and 2019 is not over yet. I am certain that I have expanded lymph nodes from sinuses on down to my lungs, but that does not concern me. It is a healthy sign that my immune system, transplanted though it may be, is doing its job. Frankly, lymphoma no longer scares me. I have fought it to a standstill so many times that it has lost its power over me.

    What you are experiencing may just be "noise" - those little symptoms that call the disease to mind, but are not related to it. In time, I suppose, we become accustomed to the noise, but never completely disgregard or dismiss the symptoms we experience.

    Do let us know what the medical team finds.
    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.

  3. #3
    Moderator Top User
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    Mar 2010
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    1,350
    Hi Sam first read this paper it will help http://www.livingwell-cancer-support...hen%20What.pdf
    Like you I had stage 4 dlbc 10 years ago and yes it does get easier, during my first 5 years I had a couple of scares and was happy to have scans just to be sure all was well, but with the second scare, my GP was more worried than I was and once I got to around 54 months any worry about relapse drifted away because I has set a 5 year clear target and knew that was looming and the chances of relapse were minimal.
    You will stay vigilant for a while and what you need is a coping strategy that bring common sense into your thinking, so you know that after 2 years relapse for us is rare so if something like a node pops up, keep an eye on it and if it develops then yes get it checked whilst at the same time reminding yourself it could be raised for many reasons. I had B symptoms so my reality check was if night sweats returned then I knew I needed to get checked quickly and I guess that helped me deal with the worry and put it in to context.

    hope this helps and as Po has said let us know how you get on.

    John
    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.

  4. #4
    Experienced User
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    Nov 2017
    Posts
    78
    Hi Sam,

    me and my wife still associated every lump/pain/complaint/tiredness to lymphoma hard to overcome that recent memories, but like other said it get easier, so keep it up and finger crossed that its just the body fighting some seasonal virus.
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done
    Ago/18: 3x HDMTx completed!
    Dev/18: PET-CT Done. All good
    Apr/19: Follow up. All good.
    Oct/19: Follow up. All good.
    ... on to follopw ups...

  5. #5
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    Thank you all for the responses. My cancer team isn’t too concerned since I’m not experiencing any other symptoms. I had a scan just over a month ago and it was clear. I think I’m just overreacting a bit. Again thanks for the help.

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Smccullar View Post
    Thank you all for the responses. My cancer team isn’t too concerned since I’m not experiencing any other symptoms. I had a scan just over a month ago and it was clear. I think I’m just overreacting a bit. Again thanks for the help.
    Noise. As difficult as it is to deal with now, we all seem to get used to it - to a greater or lesser degree.

  7. #7
    Sam,

    Two years post chemo and still jumpy, but less so with each passing month. I recently saw lights, followed two days later by a massive headache and mild confusion. (I tried to eat my breakfast cereal with a fork.) Worried about PML or recurrence with CNS involvement this time. No, went in for a head MRI, labs. No concerns visible--most likely my first migraine headache. My point is, yes, the mind does wander.

    It's like a big bear came out of the woods a couple years ago and kicked my butt. I fought him off, but he limped back into the forest, mortally wounded. I'm back to enjoying the scenery, but it will be a while before I stop looking over at the treeline from time to time. Stay vigilant, but don't let the bear live in your head.
    Age 55 at Diagnosis
    6/2017 - Fell off a ladder. Incidental finding
    7/2017 -CT shows "Innumerable" enlarged nodes up to 2.6cm in mesentery, retroperitoneal, mediastinum, SCV node. No symptoms blood work normal--including LDH.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. SUVs to 9.3. Bone marrow biopsy negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts to zero after treatment. Neulasta moving fwd. Neuts rebound.
    10/2017 - Mid point CT shows treatment effective. RCHOP continues.
    11/30/17 - RCHOP concludes
    1/2018 - PET shows zero SUVs and complete response to treatment. Rituxan maintenance begins
    7/2018 - CT shows NED. New coronary artery calcification to be investigated.
    7/2019 - CT shows NED. Coronary calcification is gone.

 

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