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Thread: Update on recurrence versus remission.

  1. #291
    Super Moderator Top User Baz10's Avatar
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    May 2011
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    Anxiety is a matter of mind over speculation.
    I'm never given to speculation these days, better not to think too deeply on the dark side.
    Anyway just had confirmed our freind Shirley is doing the knock out so I'm in brilliant hands for a hour and a half or so.
    I hope the tea is better than the last time, tepid milky coloured water without a trace of flavour.
    Thanks all for the good wishes including you BobW "old man " indeed. Great for someone that won't go outdoors if its frosty.
    Stay in your rocker you young whippersnapper, hug your hot water bottle and wrap up as the temperature could drop belowl 70deg F.Lol
    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.

  2. #292
    Administrator Top User Kermica's Avatar
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    You are in my thoughts, Barry, best of luck with everything tomorrow.

    Good health,

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

    Age 67
    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.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  3. #293
    Best wishes and know you are in my thoughts and prayers!
    Age 49 Male
    5/18/12 - Family Dr ordered emergancy CT and colonsopy
    5/23/12 - Diagnosed with Stage 4 Rectal Cancer w/mets in Liver
    6/28/12 - Combined lower bowel resection and liver resection.
    9/7/12 - Last day of Chemo. Folfox Blood Clot in Leg.
    1/25/13 - Last day of Second Round of Chemo Folfox
    4/25/13 - Ostamy Reversal
    9/9/13 - Clear Scan-High CEA
    9/16/13 - Pet Scan shows 4 new spots in Liver
    10/3/13 - Second Liver Resection removes tumor #6,7,8,9.
    11/1/13 - Started FolFiri
    5/13/14 - Pet scan shows 3 large tumors in the Liver. Time to see Surgeon again.
    6/12/14 - Third Liver Resection removes Tumor #10,11,12.
    7/16/14 - Started Xeloda and Avastin
    9/22/14 - Fistula goes septic. 2 Major Surgeries later Permanent Ostomy.
    12/19/14 - Started Xeloda and Avastin again
    5/22/15 - 3 new tumors in my liver. No surgery this time.
    12/15/15 - micro-spheres(Y90) failed completely All tumors growing
    2/5/16 - Started Lonsurf and antibiotics

  4. #294
    good thoughts and prayers for you Barry and Ill add an extra prayer request for "better tea"
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  5. #295
    Senior User Bob W's Avatar
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    Sep 2014
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    328
    Barry, old man you will do just fine tomorrow and as always you will keep doing what you like doing until you can not do it any more.
    By the way I do go out in the cold to feed the parrots, I have twenty-one of them still out here at the farm, I am thinking they combined may not be as chatty as one old brit I have never met in real life. As for your tepid tea difficulty, let me know where you end up and I will see if Starbucks can deliver a Café Americano with a couple shots of espresso to help you out a bit. You go slow old man, go slow and take care of yourself.

    Bob W
    now 61 years old
    Diagnosed, CRC July 14, 2014
    CT spotted worries on liver and kidneys
    MRI said no big deal
    Sigmoid out, resection September 3, 2014
    September 4, 2014 advised stage 2, no node involvement
    Home September 5, 2014
    Hemorrhaging September 8, 2014
    In hospital found a bleeder
    Home September 12, 2014

    07/21/2015 follow-up colonoscopy 1 year post diagnosis-not whistle clean but dang near it!

    0700/2018 follow-up to be scheduled

  6. #296
    Hi Barry,
    I too want to let you know you are in my thoughts and prayers. I pray you will recover so quick you will amaze the doctors and be posting comebacks for Bob that will keep him on his toes. You two make me laugh a lot. Thank you. We need that humor.
    Caregiver

    Husband prostrate cancer 2011
    Two years remission
    Aug 2013 rectal tumor diagnosis cancer
    Oct 15, 2013 surgery rectal, prostrate and hernia PT3,PN1b,Mo
    Dec 2, 2013 began Capecitabine 500mg 3 tabs twice a day and radiation Mon-Fri
    Jan 8, 2014 last chemo/radiation treatment
    Jan 10 surgery repair colostomy
    Feb 18 colostomy reversal
    May 14 ct scan mets liver stage IV
    June 11 chemo Eloxatin 170mg and Avastin 525mg IV every 3 weeks 6x plus oral Xeloda 6 tablets 14 days week off. Repeat 6x
    Oct 24, 2014 follow up ct scan CEA down to 5.29 from 57.22
    Nov 06, 2014 Oncologist reports cancer left is dormant. P. T. L!
    March 11,2015 ct scan tumors growing, from .7 to 2.2cm, new tumors 13 in right, 3 in left lobes of liver, new node in lung, numerous cysts both kidneys largest 10cm
    April 2, 2015 Started new chemo with Irinotecan 360mg and Avastin 500 mg every 3 weeks x 8 cycles. Oral Xeloda 6 tablets 14 days, week off. Repeat 8x

  7. #297
    Super Moderator Top User Baz10's Avatar
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    May 2011
    Posts
    5,426
    Clem,
    After Bobs remark regarding parrots im staying stum, some luck on that.
    Sheila and K
    Thanks.
    Man goes into a bar with a grey (gray for you lot over the pond) parrot on his shoulder.
    Parrot asks for a pint of beer.
    Barman looks and laughs and says Piss off we don't serve alcohol to your type.
    Parrot looks beady eyed and yells at the barman "you've never heard of diasbility parrots" Nope says barman. Well you have now , give my dumb owner a bloody pint before I report you for discrimination".
    Barry
    So Bobs OK for 21 cans of beer.
    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. #298
    Senior User Bob W's Avatar
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    Sep 2014
    Posts
    328
    Hey Barry old chaps, hate to be bursting your bubble, but I don't drink. Haaaaaaaaaaaaaaaaaaaah. The only parrot I refuse to have on the place are the greys. I refuse to have an animal around who is smarter than I am. (by the way the abdominal pain seems to have subsided just about the time the doctor has indicated a willingness to "look into it". Go figure.)

    Bob W
    now 61 years old
    Diagnosed, CRC July 14, 2014
    CT spotted worries on liver and kidneys
    MRI said no big deal
    Sigmoid out, resection September 3, 2014
    September 4, 2014 advised stage 2, no node involvement
    Home September 5, 2014
    Hemorrhaging September 8, 2014
    In hospital found a bleeder
    Home September 12, 2014

    07/21/2015 follow-up colonoscopy 1 year post diagnosis-not whistle clean but dang near it!

    0700/2018 follow-up to be scheduled

  9. #299
    Top User mojo's Avatar
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    Apr 2010
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    Good luck tomorrow! Prayers being said.

  10. #300
    Senior User Bob W's Avatar
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    Sep 2014
    Posts
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    Breathing with you today Barry old man so, you keep breathing, hear me?

    Bob W
    now 61 years old
    Diagnosed, CRC July 14, 2014
    CT spotted worries on liver and kidneys
    MRI said no big deal
    Sigmoid out, resection September 3, 2014
    September 4, 2014 advised stage 2, no node involvement
    Home September 5, 2014
    Hemorrhaging September 8, 2014
    In hospital found a bleeder
    Home September 12, 2014

    07/21/2015 follow-up colonoscopy 1 year post diagnosis-not whistle clean but dang near it!

    0700/2018 follow-up to be scheduled

 

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