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Thread: Possible Relapse after 4yr remission following auto SCT

  1. #1
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    Possible Relapse after 4yr remission following auto SCT

    I had my six month CT scans this past Wednesday. I have been in remission for follicular Non-Hodgkins for almost four years following an auto SCT. I came home last night to a message on my answering machine saying my transplant doctor wants me to have a PET this coming Wednesday to have a closer look at something from my CT scan. In the office this Wednesday, my doctor had told me that my prelim scan report was clear. I am really scared now. Anyone have any advice for me? Thanks


    43 yo female
    Original diagnosis Jan 2006 (Stage IV follicular NH Lymphoma)
    8 rounds of R-CHOP; remission declared
    Relapse in inguinal lymph node in Jan 2007
    4 round R-ICE followed by auto SCT in June 2008; remission declared
    2 year Rituxan maintenance
    June 20th, 2012 (CT done showing ??; PET scan on June 22)

  2. #2
    Administrator Top User ChemoMan's Avatar
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    Hi Sherryfd

    I am so sorry to hear of the possibility of relapse. I think it is too early to worry too much about this and even though it sounds ominous you need to wait until you have had the PET. There have been new developments in the treatment of FL so there is still hope even if you have relapsed.

    Good luck and remember we are always here to help.
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  3. #3
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
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    6,581
    Hi Sherry and welcome to the place no one wants to be but many come to value. I am very, very sorry that you had to find your way to us but agree with ChemoMan. As hard as it is to do, it is not time to panic. You have much yet to learn about what is actually going on and then much to consider depending on what you learn.

    No matter what, we will be here to listen, to advise if asked and to stand by you when it is time to rant IF the beast is back. You have my fervent hope that this is just a false alarm and the anxiety is without cause. Read ChemoMan's signature and remember Rule Number 3. Keep us posted and best of luck to you.

    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.

  4. #4
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    Thanks to both of you. I guess I just mostly don't understand how a prelim CT scan can be clear and then later on, it's not. I have 3 kids to raise, so I am willing to fight any way I can to survive, but if my cancer is back I so dread going through chemo again or another transplant.

  5. #5
    Moderator Top User
    Join Date
    Feb 2011
    Posts
    597
    My best guess is that there may be a minor discrepancy in the measured size of a node from one scan to the next, so they would want to do a PET just to confirm that there's no activity. These types of discrepancies aren't uncommon, depending on machine calibration from one scan to the next, the way you're situated on the machine during the scan, differences between the way two different specialists may read the scan, etc. It's hard not to worry, I know, but just guessing again, I'd say the the chances are much greater that it's nothing than it is something serious.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    1/2018: Remission continues (>7 years) Down to one checkup/year!

  6. #6
    Newbie New User
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    Well, my PET scan was positive in the enlarged lymph nodes seen on the CT scan, but my doctor said only slightly positive. I had also been having a really bad bout of my colitis during the time of my scans so he said it could be a false positive due to inflammation. I am having laparoscopic surgery this Monday to remove one of the iliac lymph nodes for biopsy. I am sure praying that my biopsy will be negative.

    43 yo female
    Original diagnosis Jan 2006 (Stage IV follicular NH Lymphoma)
    8 rounds of R-CHOP; remission declared
    Relapse in inguinal lymph node in Jan 2007
    4 round R-ICE followed by auto SCT in June 2008; remission declared
    2 year Rituxan maintenance
    June 20th, 2012 (CT done showing ??; PET scan on June 27 shows slight positive)
    Laparoscopic surgery July 23 to remove lymph node for biopsy

  7. #7
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
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    9,858
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    2
    I am sure praying that my biopsy will be negative.
    I hope it is negative as well. All the best for the 23rd
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  8. #8
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,581
    Good luck onMonday, Sherry, I hope the procedure is uneventful and the results negative. I will be sending good thughts your way.

    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.

  9. #9
    Sorry to hear about the activity on the PET. I know it stinks, but try to remain positive as you get through the next week or so. You never know with those scans. If it does happen to turn out positive, you have SO many options regarding treatment, many of which do not require cytotoxic therapy or transplant. Let's not get the cart before the horse however. Let us know what shakes out here, and remember that we will be here to help in any way we can. There are some very knowledgeable folks on this board.

    David
    David
    Age 51
    March 1, 2011 - Grade 1 Follicular Lymphoma from node removed from neck.
    2/22 PET/CT scan revealed one additional node in groin - also removed.
    Officially Grade 1 / Stage 3 due to second node.
    No Other Evidence of Disease.
    7/8 PET/CT shows two new small nodes - opposite sides, neck and groin.
    1/06/12 Completed Rituxan x 4 Monotherapy. 2/29/12 NED! Completed 4 additional maintenance doses of Rituxan. 12/12 NED! 6/14 NED! 2/15 NED! 2/16 NED!
    6/17 CT shows 2 small nodes, neck and groin. 7/17 doing Rituximab monotherapy, x 8 this time. All is good again!

 

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