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Thread: The beast revisits

  1. #951
    Top User mojo's Avatar
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    That sounds awful Baz! Glad it is a bit better. Perhaps a premedicate you with some antibiotics with the sepsis coming in so often. Hoping you get some answers Tuesday.

  2. #952
    Super Moderator Top User Baz10's Avatar
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    mojo,
    For sure if it had been sepsis it would have provided key indicators within 72 hours.
    As there are non, I’m fairly confident it is not a infection, certainly not of magnitude of sepsis.
    Factor 1
    I am reasonably convinced subject to confirmation my stomach and bowels have not recovered from the drugs pumped in in November to combat sepsis and kidney failure.
    The symptoms are in line with a stomach ulcer and severe IBS type.

    Factor 2
    Pain has been consistent in the same region for 19 months or so but increasing in severity, the only addition being it has extended below and into the the left ribs and down the inguinal crease.

    Hence the virtual colonoscopy CT which should show the whole of the small and large bowel and everything else in the abdominal region.

    These results we shall have to wait for.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  3. #953
    Top User mojo's Avatar
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    Well I am hoping the virtual colonoscopy figures this out. We seem to have a lot of clostridium difficile infection after antibiotic use lately Especially in those treated with high-dose antibiotics. Hoping and wishing the best for you, mojo

  4. #954
    Super Moderator Top User Baz10's Avatar
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    mojo,
    We shall get to know in due time I have no doubt.

    As a follow up to the right femoral occlusion I am seeing vascular at the local hospital this afternoon.
    Maybe we shall find out IF they intend doing anything about it,
    as it was caused by the hospital they will probably in the usual NHS tradition of ignoring it completely suggest the do nothing approach is the best course of non action.
    What is certain is there is no doubt it has ended my sports, particularly my skiing passion as the least pressure I put on the leg(s) results in a lock up.
    This includes even cutting the grass which I used to do in about 1 hour, now alas it takes at least 3 hours with frequent stops to let the legs recover.

    Over all I’m fairly disheartened As one can imagine.
    Yet better than what I was told last year
    ”Use it or lose it”.
    So despite the pain I have used it.

    Maybe I should again take up Nicks passion for horse riding, something I did from childhood given all my mothers side relatives are farmers.
    Nah I’d fall off and do myself some serious damage.
    Barry
    Ever hopeful.
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  5. #955
    Super Moderator Top User Baz10's Avatar
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    The response from vascular as predicted is

    No intervention due to the probability of losing the the leg.

    Just another Doppler scan to identify current blood supply status (better or worse) than last year.
    Somewhat of a Physiological blow, but that is what it is.
    Causation
    Chasing lung cancer which didn’t exist.
    So, from walking at 110/120 paces a minute last September 5th to the immediate post biopsy of maximum 50 per minute afternoon of the 6th is dismissed completely.
    Every attempt at pinning what went wrong during and immediate post biopsy is ignored, glossed over with the statement “use it or lose it”.

    He even said “how are you getting on with lung cancer”, which came as a shock as both I and the good lady instantly replied “what lung cancer” .
    Then he went on to say and I quote
    I don’t know why I am seeing you
    to which I replied, neither do I if you are so well briefed.
    He then decided it probably was a wise move to at least look at my file on his monitor and then said
    Ahh, yes I see now it is a 6 month follow up from vascular.
    Follow up ?, no questions, no examination, not even the rudiments of reading up my notes.
    Totally shambollick.

    You couldn’t make this up.

    As of today I have had enough and will commence taking the matter through Pals (Patient advisory and liaison service).

    Im not suggesting they (the hospital ) hasn’t tried, but now they have tried my patience to the limit.

    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  6. #956
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Ah, buggaz. And I was just ranting to DW about certain of the RNs at SCCA. Doctors? World class. Nurse-practitioners? Super. RNs? Will work harder to avoid work than it would take to accomplish the work. If we have become "patientized" they have become institutionalized. Or should be.
    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.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
    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 of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 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. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

  7. #957
    Super Moderator Top User Baz10's Avatar
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    po,
    buggaz indeed, what a shambollick and totally uneventful short meeting.
    I will not honour it by suggesting it was a consultation.

    Took me a little time to get to sleep as I was so frustrated and annoyed, never mind the discomfort.

    One issue I must take up with your reply is
    Nurses and clinicians, nurse specialists I cannot fault as they all have been superb.
    Doctors and specialists just the opposite from recent events excluding certain specialists and departments are nothing short of superb or world class.
    Others I can’t find the acceptable words to describe.
    Institunionalised Possibly or covering their butts.

    The NHS culture is one of cover up whilst it lauds it’s objective of learning from mistakes which lets be honest do occur.
    Yet, when they ignore problems or mistakes, how can learning be their mantra.
    FYI there exists in the U.K. a law which allows full disclosure and that includes hand written notations between clinicians covering every aspect of patient care.

    Now I may just trigger this option and there is no way they can “doctor” the data.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  8. #958
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    We have a class of nurses here which are pseudo-physicians. Nurse-practitioners and Physician's assistants. They do clinic consultations and prescribe medicines. Below them are the Registered Nurses. Many are just fine and caring. Two that I encounter are not exactly worthless, but do let you know that they would rather someone else assist you. I soft sell the idea to my hematologist/transplant doctor, but DW speaks her mind. You know the type...

  9. #959
    Administrator Top User Kermica's Avatar
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    Follow up ?, no questions, no examination, not even the rudiments of reading up my notes.
    Totally shambollick.
    ...and, of course, no answers (as you predicted). I have been following your travails in my brief interludes on line, Barry. I continue to hope you find the relief you deserve so much.

    As of today I have had enough and will commence taking the matter through Pals (Patient advisory and liaison service).
    I think this is a great idea, Barry. You have been so patient and understanding of the NHS throughout all of the trials and tribulations you have shared with us. If nothing else, you can at least transfer some measure of misery back to them! They have certainly made sure that you had plenty of it to share.

    One issue I must take up with your reply is
    Nurses and clinicians, nurse specialists I cannot fault as they all have been superb.
    I am with you on this one, Barry. For years now, I have had a Physicians Assistant as my primary GP doc. I find them more available, more accessible and more willing to spend time discussing the subtleties of my specific situation when I need that. RN's are fine but they have been relegated to a secondary role in practice offices. When given a choice, I also opt to see Nurse Practitioners when I can. Doctors when necessary but I will take the smart folks just below them in the pecking order when I can.

    Anyway, I hope you find more relief soon and that you are both doing as well as can be as the days go forward.

    Good health,

    kermica

  10. #960
    Super Moderator Top User Baz10's Avatar
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    K,
    We concur on specialist nurse practitioners also ward sisters, staff nurses who in my humble opinion have thenpatients best interests at heart.

    Some ward doctors, well first and second year post diploma I have had many a discussion nee argument with.
    They are let loose primarily to see how many cannula’s they can get in per day as they do get merit points for each.
    One numb nut in 2011 decided he in his infinite medical wisdom asked if I objected to him putting a cannula in, having one already Octopus as they are termed in the right arm, was going to attempt another lower down when I withdrew my arm and said No.

    Looking forlorn he asked why, because you dimwit you don’t put two cannulas in the same vein or artery.
    Puzzled he was, until,I said double infection tract. Not permitted.
    Ahh, then had 3 attempts at getting in the left arm. Abysmal failure.

    Factual jocularity aside, some are good, others are riding their I’m a doctor ego.

    Life K is life and we accept the the ups and downs, yet determination never faulters.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

 

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