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Thread: New in TN

  1. #691
    Administrator Top User Kermica's Avatar
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    Jul 2009
    Location
    New York
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    6,074
    Bank, I am so sorry to read of your trouble and frustration regarding finding a competent doctor. I agree with POGuy that it would be worth your time to ask your former GP , surgeon, and anyone else you know in the medical community for recommendations to the best ENT doc they know or know of.

    As to filing a complaint, I also agree that it has the potential to help others so I would keep it as an option of you are not ready to do something now. The most important thing is to get your throat assessed by a competent doctor so you can get the relief you need. I hope you find him/her soon.

    Good health,

    kermica

  2. #692
    Regular User
    Join Date
    Aug 2017
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    Pellston Michigan
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    I have been coughing night and day for 8 months. I feel like I drank a gallon of gasoline. My throat is has got to be irritated inside.
    As much as you don't think it has any thing to do with acid reflux ,if he prescribed you medicine for it I would at least try it . You don't have to have heart burn to have it. I am not trying to convince you that is what it is but if you start taking something for it and nothing changes you won't have to be brushed off again from a Dr saying that is the problem . The other option is to go the ER and insist they keep looking until they find something, but you have to really insist . They should have specialist in the hospital that are on call and can look at you, again if you are persistent. As much difficulty as it seems you are having and your past history I would not worry about if it rises to the level of going to the ER in your mind or not and would just go . I don't know how far down the Dr you just went to was able to look ,but if he didn't see any thing it wasn't far enough or was looking in the wrong area !

  3. #693
    Senior User
    Join Date
    Oct 2011
    Location
    Tn
    Posts
    469
    Hi, yea I am better since doing the 10 day round of antibiotics but I can tell the problem is raising it's ugly head again as the meds wear off. The EN&T doctor was probably right in his diagnosis and I have been doing some research into the issue. His lack of bed side manner does not make him wrong. I am taking the stomach acid reducer and eating less and less at meals. I have lost 15 pounds so far. I kinda stopped there but I figure with enough exercise I will loose more weight soon. My wife thinks she has found a clinic full of doctors we can try out two towns over. I might make an appointment soon to give them a good look see. They might just fit my needs. I am trying to be optimistic.

    subject change: I negotiated my retirement with my employer. Due to the fact I am in a specialized field and they can not hire off the street a replacement without years of training. The date I can leave is tentatively set for June 23, 2019. I know that is far off but it will be here quick if I stay busy and do not dwell too much on getting to that date. I am not leaving on disability, just a normal retirement. I will be 55 that payperiod. I get a severance package, full retirement and get to keep my insurance.
    Last edited by Bank Walker; 09-30-2017 at 05:16 PM. Reason: punctuation

  4. #694
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,952
    You are in the catbird seat! Sounds like a killer deal. I got a boot up my backside, losing medical and dental as I flew out the door. At least I got to keep my pension. You will not regret retirement. Impossible. And, you still have those hundreds of projects around the home and property to keep yourself busy. Once retired, you will have both the time and energy to tackle them.
    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.

  5. #695
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Location
    New York
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    6,074
    I am not leaving on disability, just a normal retirement. I will be 55 that payperiod. I get a severance package, full retirement and get to keep my insurance.
    You are in the catbird seat! Sounds like a killer deal.
    Less than 21 months to go, Bank, you have got it made in the shade, congratulations to you! Nice job protecting yourself and your family. I agree that you will never regret retirement as long as your money lasts as long as you need it to which I suspect you have covered in your planning.

    I will look forward to hearing about the projects going forward and to how you manage your transition time to retirement. Are they hiring your replacement for you to train? I assume that is the focus for the time remaining given the complexity and skills required for the job.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 66
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.

  6. #696
    Senior User
    Join Date
    Oct 2011
    Location
    Tn
    Posts
    469
    Yes, life is good. Like many companies they are in a almost constant state of transition and reorganization. I am kinda stepping to the side to finish up a project and younger people are moving around and up into positions. The transition crew will finish up at the end of March 2019. Then I will have a 2 1/2 month time where I can go home early on leave or go work another project at another location. At least that is the plan. I figure we will go over time and that 2 1/2 months will get smaller.

    Yes, lots of projects. Now I am working out of town, youngest son and family moved back to our town. His company has set him up to work from home. So, the 100 year old historic Mansion (hahaha) he bought and was restoring is taking my time right now getting ready to sell. Dry wall repair, updating wiring, landscaping, refinishing floor and painting. Lots and lots of fun. Seriously though it is a beautiful home and they are only selling to get back here with family. 5400 sqft, 5 bedroom 2 bath with 2 car garage and servants quarters. We are blessed they are back here. They have 3 children and needed family.

    In August I bought a 1946 Spartan Mansion travel trailer. I am trying to decide if we are gonna set it up for travel or permanent in a spot for glamping. It needs to be restored but it gives us something to do as a family.

    In the first week of Sept. I was working at mother in law's home. She needed surgery and a hospital stay after a colon cancer scare. Turned out to be diverticulitis. Anyway, I remodeled her bath room and put in a walk in tub. She is back home and much better now. Yesterday she was walking without a walker and cooked a pot of white beans and corn bread.

    Again, life is good. I am blessed.
    Last edited by Bank Walker; 10-01-2017 at 06:31 PM. Reason: typo

  7. #697
    Senior User
    Join Date
    Oct 2011
    Location
    Tn
    Posts
    469
    Well, we finally found out what is part of my mother in laws medical issue. After they removed 6 inches of her colon due to it being blocked due to diverticulitis. She was recovering well but had to be put back in the hospital several times. Yesterday she was diagnosed with C-Diff. We have been doing research on it. Really bad stuff. She is in quarantine now for 21 days.
    Age 53
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  8. #698
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,952
    Prayers ascending! Just out of jail, er, I mean the hospital myself. Skin/leg infection. I did get to use your walking stick, though!
    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.

 

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