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Thread: The beast revisits

  1. #21
    Super Moderator Top User Baz10's Avatar
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    Po,
    as always profound accurate wording.
    I wish to point out to anyone reading this thread and borrowing po's words
    From such these, hope arises
    Never truer words
    Friday is the colonoscopy so Picolax starts tomorrow, this has ended my plans to do some therapeutic shopping with my better half Anne.
    Its not me that needs a break it is the good lady, quite how she has coped with all the worry and anxiety about me over the last 6 years I simply don't know.
    She is a rock that's for sure and far more courageous than myself.
    So Friday it is down at the hospital at 10 am for my appointment with Dynorod the drain cleaning experts.
    The only thing is they only give me one type of relaxant so I'm fully awake on gas and air for the whole procedure.
    Gas and air that's a laugh (pun intended) as nitrous oxide doesn't make me laugh nor does it take the pain away.

    This will be the 7th time and apart from one I have been awake for all of them but this time I shall be fully awake and Focussed to see what they find.
    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.

  2. #22
    Administrator Top User Kermica's Avatar
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    Barry, I am very sorry to just now be catching up with you and your distressing news. We have been traveling and dealing with the house along with my daughter's graduation from college and your original post escaped my notice some how.

    I wish this wasn't so, of course, which helps not one bit, I also know. Nothing for me to say, really except know that you are in my thoughts. You are a rock of these boards and, if anyone can keep up the fight, it is you, my friend.

    Good luck today with the procedure and 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.

  3. #23
    Super Moderator Top User Baz10's Avatar
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    K, many thanks pal.
    I will post when I have the final results amd a prognosis as there is little point in posting about every needle and cannula etc.
    That becomes boring.
    All I need is to get the next week or ten days over, sit down and work up a action plan with my good medical people and go for it.
    I intend going nowhere, certainly not to oblivion and look forward to boring the pants off all our members for quite some years.
    Meanwhile the Picolax has worked well and anatomically i have the equivalent of a Japanese Flag or the inside of a Dragons nostril.

    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. #24
    Moderator Top User Fourlegsgood's Avatar
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    Aug 2011
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    UK Leicestershire
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    875
    Quote Originally Posted by Baz10 View Post
    .......the Picolax has worked well................
    Barry
    Ah, Picolax. Only the favoured few are allowed the delights of Picolax.

    I hope it was a particularly good vintage that you were sampling tonight.

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping after 8 weeks and first competition 10 weeks after operation. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  5. #25
    Administrator Top User Didee's Avatar
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    Jun 2010
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    NSW Australia
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    Oh heck Baz. There you have been supporting me on my thread and I hadn't seen yours till now. Do you a deal. We both come through, ok?
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  6. #26
    Super Moderator Top User Baz10's Avatar
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    May 2011
    Location
    UK
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    Di,
    we shall both come through of this I have no doubt.
    Nick,
    2009 vintage with specific instructions on how to give to elephants.
    Baz
    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.

  7. #27
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
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    DynoRod over and done with (colonoscopy to the uninitiated).
    Not a big deal so anyone going to have one don't get panicky as seriously it's no big deal and mine was done with no Anesthesia or sedation.

    I seemed to be the focal point of some attention as not only was the doc doing the colonoscopy there but also my surgeon watching the screen as we progressed, ( yep I was watching)there was some debate. I didn't quite follow the technical terminology as too busy gritting my teeth.
    Biopsies were taken and I'm assuming we now wait for a few days being told they would have the results by late Monday or Tuesday.
    He doesn't want to commit himself for obvious reasons but is hoping the clearly seen mass is not cancerous.
    He mentioned some unpronounceable medical term so by Jove I am hoping above hope his educated hunch is correct.
    Keep you posted with everything than can be physically crossed, Crossed.
    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.

  8. #28
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Location
    Pacific NW, USA
    Posts
    8,227
    Pulling for you, Barry. Colonoscopies are much like stem cell tranpslants - it's the prep that is the nasty bit. The actual procedure often pales by comparison. Next one, maybe some sedative?
    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.

  9. #29
    Top User mojo's Avatar
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    Prayers for good news

  10. #30
    Administrator Top User Didee's Avatar
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    Crossing everything here that can be crossed too, Baz.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

 

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