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Thread: Advice?

  1. #1
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    Advice?

    My labs have been a bit wonky for the past 3 tests and my dr. told me this past week that she's referring me to a hematologist-oncologist for possible leukemia/lymphoma and wanted to make sure I'd have someone at that appt with me. I'm currently waiting on my lab results from last week, but here are the abnormal ones so far. I'm not panicking, just wondering what to expect from upcoming referral as far as additional tests, etc. Thank you all so much for your time.

    Abs Neutrophils - 9.69 and 10.1 K/uL (High) -previous was 5.1 K/uL - (normal range is 1.6 - 8.5 K/uL)
    Neutophil % was left for path review (73%?) - previous was 62% - (normal range is 40-74%)

    Ag Ratio - 1.3 (Low) - no previous to compare to

    AST - 6 and 9 (Low) - no previous to compare it to - (normal - 15-38 iU/L)

    Hemoglobin - 11.9 g/uL (Low) - previous was 14.1 g/Ul - (normal range is 12 - 15.4 g/dL)

    Large platelets - 1+ (no reference was given?)

    Lymphocytes - 14% (Low) -previous was 25.1% - (normal range is 19-48%)

    SGOT/AST - 9 iU/L, 9 iU/L, 7 iU/L - previous was 11 iU/L - (normal range is 10-38 iU/L)

    WBC - 14,700, 12,300, 12,900 (High) - (normal range is 4,000 - 11,000) - previous lab was 7,900

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Sorry to hear of this. First, a hematologist treats disorders of the blood - not necessarily cancerous conditions. Honestly, it is much more likely to be some sort of viral or fungal infection, or an autoimmune condition. There is testing that can be done to identify or eliminate the most common of these. Antibiotics are normally given by PCPs, but do not touch any of those conditions. Let us know how things turn out!
    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 so much for your reply....she's also referred me to Rheumatologist for possible lupus last week also. I've been fortunate enough to have found a really wonderful dr. and I have no doubt she'll figure this out too. Hope you're doing well also. Thanks again!

  4. #4
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    So, I met with hematology/oncology dr. in late Nov. and then he was on vacation for awhile, but he ordered additional labs and contacted me in mid January. My wbc and eosinphils were still elevated, both my primary dr and the hem/onc have both noted supraclavicular lymphadenopathy on left side. They ordered an u/s for me last week and it showed a 10x6x8 mm node (0.5 cm (or 5 mm) and over is supposed to be abnormal and that area is also supposedly one of the highest percentages of malignancy - 85-90%). The dr.'s office is making arrangements for a chest CT scan. Just wondering whether anyone else has had enlarged nodes in that particular area and what caused theirs?

  5. #5
    Moderator Top User
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    Hi Megan, enlarged nodes can be due to many reasons and one if some sort of infection, not sure where you have got the information about nodes being abnormal if they are bigger than 5mm, many haematologists will tell you nodes below 1cm are normal and often they won't investigate unless they are bigger than that. I have seen many posts over the years where people were worried about enlarged nodes and in the end they did not have lymphoma, so have the X-ray and see what it shows. If they were worried they would be sending you for a PET scan and that would be followed up with a biopsy if something of concern showed up on the scan. So in answer to your question yes people have enlarged nodes in that area and sometimes they never find out what caused it, so lets hope it is nothing and you can move in your life.
    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.

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Those nodes are tiny - well within normal limits. As to labs being off, the only thing pertinent might by a grossly elevated LDH. Lymphoma does not normally show in blood tests until late stage with widespread disease - and you would definitely be well aware of that.

    As to enlarged nodes, every human being that has ever lived has had enlarged nodes. If they do not enlarge, we will quickly expire to massive, uncontrollable infection. Since they are not cancer detectors, maybe think of them like tiny lungs, inhaling and exhaling according to need.

    Whatever you have, it appears to be chronic, so there is likely plenty of time to find the actual cause.

  7. #7
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    Quote Originally Posted by johnr View Post
    Hi Megan, enlarged nodes can be due to many reasons and one if some sort of infection, not sure where you have got the information about nodes being abnormal if they are bigger than 5mm, many haematologists will tell you nodes below 1cm are normal and often they won't investigate unless they are bigger than that. I have seen many posts over the years where people were worried about enlarged nodes and in the end they did not have lymphoma, so have the X-ray and see what it shows. If they were worried they would be sending you for a PET scan and that would be followed up with a biopsy if something of concern showed up on the scan. So in answer to your question yes people have enlarged nodes in that area and sometimes they never find out what caused it, so lets hope it is nothing and you can move in your life.
    Thank you both for your replies. I'm so sorry it's taken awhile to get back on here, but have been going through tons of tests and referrals to specialists between military and civilian dr's and each referral can take forever it seems! I'm sorry if I got bad info online before - here's one example of what I'd seen online -

    "What is the normal size of a supraclavicular lymph node?
    It is suggested that palpable supraclavicular, iliac and popliteal nodes, epitrochlear greater than 0.5cm, and inguinal nodes larger than 1.5 cm are abnormal. The nodes in other areas are considered as abnormal if their diameter exceeds one cm.
    Peripheral Lymphadenopathy: Approach and Diagnostic Tools
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3993046/"

    I've been to the ENT that showed me several nodes that were seen on the CT with contrast that he ordered 2 weeks ago but said he only biopsies if they're over 1 cm (mine was 10mm x 6mm x 8mm), which is right at 1 cm, I think? He also looked over my labs because the supraclavicular area is still swollen (he could still see and feel it) and referred me back to hematology-oncology after several more abnormal results last month. (past few months, have had several high wbc (8 of 9) neutrophils, monocytes, eosinophils, mpv and several lows from hematocrit, hemoglobin, iron, lymphocytes, mchc, sgot/ast.) I saw the hematologist and he's special- ordered a flow cytometry test, but that it will take a few weeks to get back. He didn't really explain what he's looking for with it though and I'm having trouble finding much info on it online? Thanks again for everything for your help!

  8. #8
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    1. I would not stress over cancer - or even think about it. 2-5 cm nodes would be concerning. Rapid increase in symptoms would be concerning.
    2. High white counts point to infection - but is it bacterial, fungal or viral?
    3. As long as you have been pursuing this, it is clearly not an emergency, whatever it is.
    4. Remote possibility: Suppose it is some sort of (extremely slow-growing) malignancy. You might very well succumb to old age before it becomes a problem.

    Obviously, the doctors think that something is going on, but it is simply unknown. I would be somewhat careful in asking for additional testing. Medical investigation and diagnostics can take on a life of its own - leaving you with pieces cut out of you, damaged nerve endings, scarring and no answer. Since there are millions of viruses that are unknown and not described medically, it could easily be one or even several of them simultaneously. I just went through a week in two hospitals and three ER visits, every blood panel known to medical science.

    Bottom line: it remains a mystery. And, that is quite possibly what you are experiencing. After the veritable plethora of tests, you can safely dismiss the idea of cancer. Could it be? Of course. Some babies develop cancer in the womb. As long as you are alive, your body is producing mutated cells. It is always good to remain reasonably vigilant, but if you suspect that you are an anxious person, checking yourself can be throwing fuel on the fire.
    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.

 

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