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Thread: The beast revisits

  1. #801
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Pacific NW, USA
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    8,256
    I suggested boarding (not seriously) only because it would give you the chance to inflict pain on someone or something else - a skiiing consultant or doctor, which would be a nice turnaround.
    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.

  2. #802
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
    Posts
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    Mick has my utmost admiration and I’m sure the hot tub will be bubbling away in the spring.
    Indeed, we talk a lot about staying positive on here, I’ve got to say for several weeks staying positive was difficult in fact I went AWOL.

    Who got me through, you all did for which I thank you one and all.

    po,
    Seriously mate I’m quite mild mannered, don’t hold grudges and definitely not malicious.
    I say it as it is, always have and always will, whether my docs like it or not.

    I have a problem they gave me as the vascular consultant explained

    ”When your heart rate dropped to less than 40 due to the pneumothorax
    the velocity and volume lessened and in response to the biopsy your blood also thickened with the pain and lack of oxygen some adhered to the wall of Your aortic bypass as it was plastic”.
    So, the moral is
    You lot caused it, now fix it.
    I rest my case as it’s not too much to ask is it ?.
    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.
    Prostate Cancer confirmed Gleason 3+4.
    Active surveillance ceased and intervention recommended.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 07/09 to be done.
    Just a little recurrence and another 20 cm of colon vanished under the knife.

    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. #803
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
    Posts
    4,821
    An interesting dis ussion with my GP this afternoon after a number of abortive attempts in hospital as to why I was put into ICU.

    It turns out (Having now read the case and discharge report on the GPs screen) it was a acute kidney failure with renal impairment.
    Yikes, this is a new one to me as well as my heart was all over the place.
    No wonder they were using IV potassium to rebalance the electrolytes.

    apparently no lasting impairment but I’m pleased I asked.

    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.
    Prostate Cancer confirmed Gleason 3+4.
    Active surveillance ceased and intervention recommended.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 07/09 to be done.
    Just a little recurrence and another 20 cm of colon vanished under the knife.

    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.

  4. #804
    Regular User
    Join Date
    Nov 2017
    Posts
    22
    It's nuts as to why the medical professionals think it's ok not to inform patients of anything.... (Like were baboons) glad it's nothing serious on the other had its, somthing u need to know
    Baffling!!!!!! 😣😣😣😣

  5. #805
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
    Posts
    4,821
    Eleda,
    my philosophy is
    Water under the bridge so no point in worrying now.

    But yes you are correct, we seem within our 2 isles where the medical profession seem to keep certain things a guarded secret of as you say treat us like baboons.

    Quite interesting my two surgeon for the lung surgery were both Arabic, one from Egypt the other from Jordan.

    Both spoke impeccable English with no trace of an accent, yet they discussed me and my case in Arabic until they walked in to ICU one morning and I greeted them in Arabic and asking what was my problem.

    Surprisingly all conversations from then were in English and the sister said, wonderful you can tell. Us what they are saying.
    Love taking the large P out of some of the smug SOB’s.

    Barry
    Ps
    Ask your docs
    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.
    Prostate Cancer confirmed Gleason 3+4.
    Active surveillance ceased and intervention recommended.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 07/09 to be done.
    Just a little recurrence and another 20 cm of colon vanished under the knife.

    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. #806
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
    Posts
    4,821
    Footnote,
    Son wants us out in Dubai for Xmas and is piling on the pressure.
    Doc says he has no problems with me flying but leaves the decision to myself.
    As much as we would love to go, I simply do not feel in any condition to go.
    Now that’s more than unusual for me and feeling I’ve let Anne and Simons family down.
    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.
    Prostate Cancer confirmed Gleason 3+4.
    Active surveillance ceased and intervention recommended.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 07/09 to be done.
    Just a little recurrence and another 20 cm of colon vanished under the knife.

    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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