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Thread: Hi, I am not diagnosed yet. I am frustrated w/ doc who ignored me until it got bad

  1. #1
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    Hi, I am not diagnosed yet. I am frustrated w/ doc who ignored me until it got bad

    Hi, I am not diagnosed yet. I've been followed for 20 years by a hematologist oncologist for IgM Mgus. (Which has a 2% progression rate per year to a lymphoprolific disorder).Two weeks ago I showed him a lump on my neck and he referred me to an ENT. In the meantime, I fractured my back and my physical medicine dr ordered an MRI of my spine. Last week the MRI a clerk for the radiologist called and said to follow up with my oncologist. He must have said stat, because I got in right away and my onc ordered a CT scan of chest abdomen and pelvis. I am scheduled for both the CT scan and surgery to have the lump excised.

    In the last few months I have declined. I lost 20 lbs , but when I told my PCP I was having trouble with loss of appetite and trouble breathing, he wrote on his notes (I obtained my records) that I was "anxious."

    Now I have unexplained bruising and drenching night sweats. I am feeling calm about the possible diagnosis of some kind of lymphoma. What is troubling me is that I am frustrated with my doctor who ignored me until it got this bad. And I have to say the waiting is difficult.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Since there is no diagnosis of malignancy...

    You certainly should be cautious, given your history. Yet, not all lympho/myeloproliferative conditions are cancerous. "STAT" referrals and expressions of concern by doctors must be taken with a grain of salt. It is the pathologist - and no other - who diagnoses cancer. Agreed that the waiting is a bear. I was at stage III or IV when I began the diagnostic process with local doctors and pathologists. It still took me two full months to have a diagnosis nailed down, and this was only after I consulted with an NCI designated comprehensive cancer center.

    And, if you are in the US, I strongly suggest that you do, as well.
    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
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    Thank you PO18 Guy. Especially the part about "Believing in the redemptive value of suffering makes all the difference."

  4. #4
    Super Moderator Top User po18guy's Avatar
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    You know what is strange? At my second relapse, I had about two dozen tumors as well as spleen and small intestine involvement. But all were in too deep to biopsy, as it would have amounted to major thoracic surgery. Doctor half-jokingly said that I should grow some tumors closer to the surface, so I waited and allowed the cancer to progress.

    When a few more tumors appeared, we biopsied. It may sound surreal, but the strange and unusual becomes the normal and usual in the cancer world.
    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
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    34
    Seconding Poís hard-earned wisdom: If this does turn out to be a lymphoproliferative disorder, go to one of the NCI centers. Having been to two of them, they are not all created equal.

    At the best of the NCI centers, you can see an MD who has spent their entire career treating your specific type of disorder, rather than being a more general hematologist. In my case the MD at the Fred Hutchinson center in Seattle steered me away from the radiation therapy recommended by my local NCI Center. He said the gain was likely to be minimal, apart from preventing local recurrence. And he felt that it posed a risk of rendering me unable to take chemotherapy in the future, because of the possible damage to my already screwed up bone marrow. He was surprised that the other NCI center did not perform flow cytometry on my bone marrow, to help us definitively rule out stage four; If my bone marrow were positive there would be no real point in doing the radiation

    So thatís the kind of wisdom you can get at a place like Sloan Kettering or the Hutch

    Hopefully you wonít need it!

  6. #6
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    Thank you for the recommendation about the NCI centers. Today one of my other doctors told me to get a pathology second opinion on the lump removed from my neck. I called City of Hope in Duarte, Ca. Are they good? We are also close to UCLA and USC.

  7. #7
    Super Moderator Top User po18guy's Avatar
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    That is a very good sign from your doctor. According to the National Cancer Institute, City of Hope certainly is an excellent center.

    https://www.cancer.gov/research/nci-...kmancityofhope

  8. #8
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    I called City of Hope for a pathology second opinion, as my cardiologist suggested, and after being told it would cost $384, I was told they only did pathology second opinions from out of the country. ?? Then I was told the $384 was for a consult with a Head Neck Surgeon (after I already told them the lump was taken out.) I have a message into my oncologist who I've been seeing for 20 years for a "pre-cancer" called IgM monoclonal gammopathy, which means one cell keeps replicating itself. Also 20 years ago I was told I had lymphomic brain cancer and 4 months to live. Then they changed it to a form of Non Hodgkins Lymphoma called Waldenstrom's Macrobulenemia. Then after a month or so and another bone marrow biopsy and other tests they said my numbers had improved and I had only IgM monolclonal gammopathy.

  9. #9
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    The Friday before Labor Day the radiologist's office called regarding the MRI of my spine and said I should follow up with my oncologist. I saw my onc the Tuesday after Labor Day weekend and he ordered a CT scan. I have not yet been told the results, but yesterday my oncologist's office called and said he ordered a bone scan, which I am having today. No one has explained to me what was in the CT scan.

    Also the lump on my neck was removed in early September and has now grown back. One doctor said it was "probably just swelling" and a nurse said it's "probably just scarring." The ENT surgeon says it's a lipoma and will not refer for a 2nd opinion in Pathology. I finally got another doctor to send the sample to pathology for a new slice and got a new ENT who I see Monday. This lump is larger than the first one and my stitches are now painful if I move my neck.

    Also I am still trying to get a back brace for my spine fracture.





    I am trying to make an appointment with City of Hope.

  10. #10
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    City of Hope appointment is next week. Lump removed from my neck has grown back hard and lumpy. Please pray for us, especially my DH. I think going through something like this is actually harder for those who love us than it is for us.

 

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