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Thread: Scared to death..

  1. #1
    Newbie New User Dfeb's Avatar
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    Scared to death..

    I went to the dermatologist to check on a red bump on my arm and they did a biopsy which came back, marginal zone B-cell lymphoma. I was referred to oncologist and waiting for my appointment to be scheduled. I've been reading on the internet but am more confused than ever. So scared, and frustrated. I shared with spouse but don't want to share with family until I know what I'm dealing with. It's been a tough Christmas.
    Thanks for your help!
    Dfeb

  2. #2
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    Hi Dfeb,

    I know it's a terrifying thing to be diagnosed and then be forced to wait to talk to the oncologist. I see you are in Houston. Are you going to the MD Anderson Cancer Center? It's the (or one of the) top-rated cancer centers in the United States, so if there is any way you can go there, I would strongly advise it. Also here is an information sheet on marginal zone B-cell, from a reliable source. It is very treatable!! http://www.lymphoma.org/atf/cf/%7Baa...T_MZL_2013.PDF

    Hugs and good thoughts!! - V
    Researcher, advocate, and caregiver to my son, age 24
    July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
    Sept 2016, Third round of E-CHOP complete; PET scan NED
    Nov 2016, Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016, PET scan NED
    March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
    March 2017, CT scan shows relapse. Confirmed by PET
    April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
    May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists)
    June 2017, Only partial remission with Brentuximab
    July, 2017, ICE x 2 (worst yet). Awaiting PET-CT scan.
    August, 2017, very good response, but not CR, moving forward with ASCT. Outpatient at CBCI in Denver.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear about the difficult season. As to the lymphoma, it almost sounds like primary cutaneous marginal zone lymphoma. Lymphoma is a "liquid cancer" so it may appear anywhere in the body. I'm sure that they will want to do some scanning to see if it is also elsewhere, but try not to freak out if they find it elsewhere, or if they say it is stage III or IV. Lymphoma is treatable no matter where it is found, and no matter which stage it is. Stave IV lymphoma is ot the emergency that stage IV is on other cancers. If it is primary in the skin, then it is slow growing and may even be treated with topical steroids or light therapy.

    It would be a very good idea to have the biopsy sample evaluated by another pathology lab to make certain that the diagnosis is correct - lymphoma can easily be misdiagnosed as a different type or sub-type.
    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. Active surveillance is the course of choice.
    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
    Newbie New User Dfeb's Avatar
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    I thank you for your response, v. A referral was made to one doctor at Methodist and I have an appointment with him next Thursday. My first response also was to look for a doctor at MD Anderson as well. I made an appointment with my internist for a regular physical and had my records sent to her. I'm hoping she will make a recommendation for a specialist at MD Anderson. I don't think it would be a bad thing to get two opinions before jumping in. Thoughts?
    Thanks for your help!
    Dfeb

  5. #5
    Administrator Top User ChemoMan's Avatar
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    I don't think it would be a bad thing to get two opinions before jumping in.
    No one here would argue the logic of that plan...we are pretty big on second opinions around here.

    Good luck
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  6. #6
    Newbie New User Dfeb's Avatar
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    Quote Originally Posted by Dfeb View Post
    I thank you for your response, v. A referral was made to one doctor at Methodist and I have an appointment with him next Thursday. My first response also was to look for a doctor at MD Anderson as well. I made an appointment with my internist for a regular physical and had my records sent to her. I'm hoping she will make a recommendation for a specialist at MD Anderson. I don't think it would be a bad thing to get two opinions before jumping in. Thoughts?
    Went to internist had annual physical and asked about MD Anderson. After breaking down in her office and shared what has transpired she suggested going to Methodist doctor since I have appt next Thursday. Getting in soon to have complete scan is a positive. SHe said MD Anderson is difficult to get into and best to be referred by Oncologist after complete diagnosis. Guess I will go and evaluate after.
    Thanks for your help!
    Dfeb

  7. #7
    Administrator Top User ChemoMan's Avatar
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    Hi

    marginal zone B-cell lymphoma is an indolent lymphoma...that means it is very unlikely to kill you...something else will likely do that.

    There are 3 different types of marginal zone B-cell lymphoma. Sounds like yours is NMZL which means you probably don't need any treatment yet

    If you find you cannot relax maybe a visit to your primary doc is in order to help with your emotional issues.

    Good luck
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  8. #8
    Newbie New User Dfeb's Avatar
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    All blood work looks normal from internist. Went to oncologist today and he was very positive. I didn't cry one tear. Yeah me! ChemoManyou you are correct, indolent extranodal marginal zone B-cell lymphoma. They took more blood and will have scan done in the next couple of weeks to see if there are any other areas that are suspect. I'm getting slides and block from dermatologist pathologist for second verification of diagnosis to be sent to Methodist Hospital. Have appt in three months with oncologist unless something comes up in scan and review of slides. I'm much more encouraged and appreciate all the support!

    I think the most difficult part of the situation is not knowing, and not wanting to burden frail 88 year old mother or daughters that are about to leave the nest. Husband was great but trying to stay strong for everyone else is hard. After trying to be an independent person all my life it is hard to lean on someone else. I need to work on this. I'm sure there will be more to come but for now all is OK.

    Thank you for your input!

    Po18 guy, Thank you for your input. Your feedback helped me to ask the right questions of the oncologist. I'm going to pick up slides and block from pathologist and bring to oncologist for re-testing on Monday. Feeling better but still anxious.

    Thank you!
    Last edited by po18guy; 01-13-2017 at 01:36 AM. Reason: CLEANUP
    Thanks for your help!
    Dfeb

 

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