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Thread: Newly Diagnosed low grade follicular NHL stage 3.

  1. #1
    Experienced User
    Join Date
    Oct 2013
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    Newly Diagnosed low grade follicular NHL stage 3.

    Hi all,

    I am 41 in the UK and have recently been diagnosed with low grade stage 3 follicular NHL.

    I have one node removed from near my left collar bone which was used for diagnosis (2.5cm), results of the CT scan show I have two enlarged node in the base of my neck and a further one in my groin, all about 3cm or so.

    No specific B symptoms at present though I do find that I feel hot in the evenings while my temp is still under 37c and I do find that I get tired much more quickly than I used to.

    I have my BMB scheduled for next week and have been told I will most likely just go on to watch and wait.

    for background the node in my neck grew over 18 months or so, sometimes it would shrink back and the grow again, I had no other symptons other than feeling a bit more run down than usual - but I put that down to being unfit!

    I went to see the DR to get the lump looked at as it was worrying me, it was looked at with ultrasound where they discounted it being a fatty lump or cyst so did a FNA that proved it was a Lymph node but was inconclusive for the presence of cancerous cells, an exision biopsy was planned and during that they decided to remove the whole node, a few days beofore the excision biopsy I had an upper body CT scan.

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,592
    Hi there, Simon, and welcome to the place no one wants to be but many come to value. I am a few years ahead of you (diagnosed in 200 but am on basically the same path, as are quite a few others here. We will do our best to provide information, support and input as you ask and hope you find this place to be the refuge so many many others do.

    I did watch and wait for about four years before starting treatment in August and am also Stage 3. Early on, we tried to kill mine when it was still stage 1 but that didn't work out in my case so here I am. I found W+W to be mostly tolerable and was able to live and work for the most part like anyone else. I did (do) have fatigue as a major factor so just tried to listen to my body as I went along. When it says "sleep", I take a nap which seems to work pretty well for me. Good luck with everything and do let us know how things are going for you, Simon. We are all in this together in a way that only those of us making this journey understand...

    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. #3
    Experienced User
    Join Date
    Oct 2013
    Posts
    74
    Thanks for the reply

    as much as I hate to be here it is re-assuring to read other people are going through the same things as I am.
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  4. #4
    Experienced User
    Join Date
    Oct 2013
    Posts
    74
    First 3 month checkup on monday, getting nervous about what it will bring...
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  5. #5
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,592
    I did many checkups without any significant change in status, Simon, and would expect you will have the same outcome on Monday. Good luck with it but that is the nature of the beast, slow growth and small changes for long periods eventually leading to treatment and, hopefully, full remission.

    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.

  6. #6
    Quote Originally Posted by simon_h View Post
    First 3 month checkup on monday, getting nervous about what it will bring...
    Watch and wait can be pretty tough to tolerate for some. I was one person who could not do it, and have plans on it if the option comes around again. I did early treatment with Rituxan monotherapy and it was the perfect choice for me. The catch-22 now is, we have to do occasional scans to know if there has been any new lymphoma activity, and doctors don't like for us to do scans too often, if we are monitoring a remission as I am. I am basically down to yearly scans, which means if I had a progression in january, but wasn't scheduled for a scan until October, I had in effect, done watch and wait for 10 months without intending to. See the dilemma? I hate it. And having to scan once per year still creates a LOT of anxiety. My next scheduled scan is in May, but only because I asked to do it. Waiting until December, which for me would have been two full years, seemed too long.

    Good luck!
    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!

  7. #7
    Regular User
    Join Date
    Oct 2013
    Posts
    16
    Hi Simon,

    I was diagnosed with low grade fnhl about the same time you were. I'm on W&W. My 3-month exam is scheduled for next Monday. I don't have any symptoms so most of the time I tend to forget that I have an illness. I hope to stay on W&W for a long time but if not, I know there are treatment options and more are on the horizon.

    My best wishes to you.

    mmillie
    Age 60, Female

    November 2013 diagnosed with Non-Hodgkins B-cell follicular lymphoma; Grade 1; Stage 3

  8. #8
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,592
    I think watch and wait is a normal strategy for managing indolent lymphoma, no matter how we label it. I did W+W for four years and then did six months of B+R therapy which finished three weeks ago. I have a scan on the 17th about which I feel little or no scanxiety, thank goodness. No matter the outcome, I am now back to doing watch and wait until and if my care team and I decide otherwise. I expect that I will have at least a strong partial remission as a result of the treatment and there will be no compelling event for rushing ahead to the next thing. At least, that is my hope as I much prefer the more laid back lifestyle of the W+W crowd.

    Good luck with everything and 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
    I think it's important to realize too that watch and wait has two different sets of circumstances—those who are watching known disease, and waiting until it progresses to the point of needing treatment, and those who are NED and who are doing surveillance for a potential relapse. These are different, and affect us differently. The question is (or was for me), which circumstance is most tolerable for you?
    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!

  10. #10
    Moderator Top User
    Join Date
    Feb 2011
    Posts
    598
    Agree with David - W&W is, by definition, a treatment (or actually lack thereof) protocol. It is not ongoing monitoring after remission has been achieved through. Patients who have fully achieved remission from any other cancer but fNHL are not considered to be in W&W mode.

    It is not a foregone conclusion - particularly with recent treatment regimens, that one will relapse with fNHL. Perhaps I'm overly optimistic (in which case, so are my oncology team) but I think it's kind of a defeatist attitude to assume that a patient in remission, particularly with no MRD, is watching and waiting for relapse. Continue to monitor, sure - and then choose between treatment or W&W IF you relapse.
    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!

 

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