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Thread: Follicular Lymphoma for a while now

  1. #21
    Top User joepet's Avatar
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    Just don't smash the glass, regardless of whether it's half full or half empty!
    My Story: http://cancerforums.net/viewtopic.php?t=11396
    Diffuse Large B cell Lymphoma
    Stage 1AE (localized in colon)
    Began six cycles of R chop 21 3rd Dec 2008
    Finished R chop 21 Apr 2009
    Complete remission as of May 2009
    Confirmed April 2010

  2. #22
    Senior User
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    Mar 2009
    Location
    Northern Virginia
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    ...especially if it's got any beer left in it!!!
    Don B
    Dec 07 Dx Follicular NHL, Grade I (Indolent)
    Stage IIIA - No Symptoms
    Watch and Wait - 6 Month Checks
    Jan 09 Scan shows Progression - no symptoms
    May 18, 09 - Started R-CVP
    After Third Round, CT scan showed some tumor shrinkage
    July 31,09 - Completed 6 Rounds R-CVP

  3. #23
    Administrator Top User Kermica's Avatar
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    Thanks for the good wishes, Don. I see the oncologist on Tuesday but expect to get a 'see you in sic months, call me if anything changes in the meantime" message from him. As usual, I am impressed with the amount of detail you have regarding your current condition. Looking at your post above, it is clear that you have a channel of communication with your oncologist that I haven't achieved. I'll see what happens with this remission and table my thoughts of switching him out until a more pressing need presents itself (while hoping every day that it won't).

    Timing couldn't be much better as the family and I are heading to Lake Anna, VA for a week this Friday. A friend has a house on the water so we thought we would give it a try. VA seems to be a favorite of mine for vacations - last year was Chincoteague (a must go fro anyone who wants a low key, relaxed spot to vacation on the ocean) and a few years back it was VA Beach.

    ...of course, I also agree with you guys that a glass half full of beer should never, ever be smashed before emptying!

    Cheers, 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.

  4. #24
    Senior User
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    Location
    Northern Virginia
    Posts
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    Enjoy Virginia

    Enjoy Lake Anna...we live about 25 miles north...it is beautiful country. The weather has been really nice. June was a bit rainy, but July has been delightful (some would argue this point). August may turn out to be a humid month but, hey...August is supposed to be humid.

    Best of Luck...DonB
    Don B
    Dec 07 Dx Follicular NHL, Grade I (Indolent)
    Stage IIIA - No Symptoms
    Watch and Wait - 6 Month Checks
    Jan 09 Scan shows Progression - no symptoms
    May 18, 09 - Started R-CVP
    After Third Round, CT scan showed some tumor shrinkage
    July 31,09 - Completed 6 Rounds R-CVP

  5. #25
    Administrator Top User Kermica's Avatar
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    Location
    New York
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    Wink Noise reduction underway - W+W continues

    Well, I just got back from seeing my oncologist and the CT report says "no new evidence of lymphoma" so we are going to continue watch and wait for the next four months and then do a PET/CT. The lesion that was there the last time is still there but nothing new was detected...whew!

    No matter how many times I do this (I think this was my 8th diagnostic scan), it is always the same for me. The internal noise ratchets up incrementaly in the couple of weeks leading up to the scan and then spikes in the time between the scan and the results visit...I really need to get better at this aspect of managing my disease!

    This time, because of a new, small lump on my chest and two on my neckline, I had myself absolutly convinced that progression had occurred...I am very happy to be wrong (again). The doc felt the nodes in my neck and said they were too small at this point to be overly concerned with them. The one in my chest could be anything but did not show up as a mass on the scan so we will let that one ride for now, also. He did agree that, from now on, we will do an ears to knees" scan to be sure that nothing is missed - especially on PET scans.

    So, for all you newbies out there, I will attest that "scanxiety" is something we all share though some more than others. The trick is to manage it through whatever method works for you and I, for one, will be working hard to do a better job of accomplishing that!

    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. #26
    Senior User Buffboy's Avatar
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    Location
    Copenhagen, Denmark
    Posts
    234
    This is fantastic news, K!

    It must be wonderful for you to continue on the W&W wagon!

    I hope to follow in your footsteps on Thursday as I get the results of my scan scheduled for tomorrow.

    I raise my glass to you, K!

    Cheers!
    Age: 34 (29 at diagnosis)
    Diagnosis: Burkitt's lymphoma, sporadic type (originally misdiagnosed as FL, then DLBCL)
    Stage: 2B, bulky disease
    Treatment: Began 8 cycles of R-CHOP 14 on 21 May 2010 + protocol. Discontinued treatment after 6 cycles due to misdiagnosis and switched to 3 cycles of R-CODOX-M/R-IVAC on 20 August 2010. Ended treatment with BEAM+Autologous SCT on 1 October 2010.
    In remission ever since.
    My story: http://www.cancerforums.net/threads/...s-old-My-story

  7. #27
    Senior User
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    Location
    California
    Posts
    384
    I'm glad to hear this!
    Diagnosed at 57 years old on December 7 '09 with DLBCL, stage III
    Completed 8 cycles of R CHOP 21 May 24 '10
    Completed 18 sessions of radiation July 21 '10
    NED from May of '10
    Recurrence of lymphoma February '15

  8. #28
    Administrator Top User Didee's Avatar
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    Jun 2010
    Location
    NSW Australia
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    So pleased to hear this!
    We are only human though and cope or not cope with mental noise as we can.
    A couple of weeks ago I had an end to my 3 months of mental noise and today I read of yours and another's in the Mel board.
    A VERY good day.
    Hugs.
    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

  9. #29
    Super Moderator Top User
    Join Date
    Jun 2010
    Location
    Connecticut
    Posts
    616
    I'll add to the congratulations Kermica! Great for you my friend!

    Seems to be a round of good news today. Take it when we can get it. Take it and get back to the task of living life!

    Thanks for all your support on my neck of the woods.

    Good health to you and enjoy your day.

    Jeff
    Last edited by cvp208; 03-15-2011 at 12:02 PM.
    Jeff
    Melanoma Stage IA
    Currently NED

    Melanoma Facts: http://www.nccn.com/images/patient-g...f/melanoma.pdf

  10. #30
    Administrator Top User Kermica's Avatar
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    Thanks, everyone, for the kind words and good wishes. You are right, Jeff, now back to living without the spectre of the beast hanging so closely over us. It feels good to know it is still at bay.

    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.

 

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