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Thread: Follicular Lymphoma for a while now

  1. #1741
    Administrator Top User Kermica's Avatar
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    Have they said they will scan to see how the nodes are responding or will you have to wait until after the final cycle?
    Thanks for the feedback, John. The plan is to assess at midpoint and, based on my physical presentation, to do a scan if progress is such that it seems warranted. If things are as they are now, I suspect we would forego the scan and just continue the treatments. I don't see much point in taking more rads if the nodes are still in place and palpable.

    I had easily-palated nodes in the neck, armpits, groin, and elsewhere. They all started to reduce within hours of my first R-CHOP infusion, and continued to reduce throughout and after treatment.
    Thanks, defens. Your experience is much closer to what happened to me with B+R several years ago. The nodes started to shrink right away and reduced to NED by the time of my post treatment scan. I did not have a mid point scan that I recall. This time, not so much so far.

    I will see what the future holds, of course. Right now, I am thinking that I am modeling the typical disease course of indolent lymphoma which is to have increasingly treatment resistant disease characterized by shorter periods of remission and less effective responses to treatment. That seems to be what my history is indicating. I am, of course, completely willing to be wrong about this possibility. The fun begins again tomorrow morning at 7:30 with eight hours budgeted to get the stuff into me.

    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.

  2. #1742
    Administrator Top User Kermica's Avatar
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    Round 3 is in the books and went very well. The entire infusion part of the day consumed just 4.5 hours. The Rituxan and I danced with a reaction when the nurse opened the flow rate wide but I chose not to ring the alarm bell (they literally give me a bell to ring if a reaction starts) right away. The numbness started to extend into my togue but then faded so I am pretty happy with all of that.

    Saw the doctor beforehand and he agreed that there is plenty to feel on examination. He offered a CT after this treatment to assess things and I declined. I told him the protocol is mid term and that I was comfortable sticking with that but also that it is my objective to do all eight sessions regardless of lymphadenapathy. We know that recurrence is more than possible so why not plan to kill as many of the little buggers as possible in an effort to delay that? Assuming that the neutropenia is not killing me, of course.

    Everyone is concerned about that problem. When I tell someone that my neutrophil value is .2 at Day 14, they all express the seriousness of that fact and the need to not fool around at all with exposure. So, I am doing that. I am also having a shot of Neulasta tomorrow to see if that will mediate the issue. As always, time will tell. Specifically, ten days will tell as that is when I will have a blood draw to see if it helped.

    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.

  3. #1743
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    Good to hear another successful day and the reaction was manageable, I had the neulasta injection 24hrs after chemo and it helped raise the count, nothing spectacular, but meant each treatment went ahead as the count was always 1 or above come the 2 days before treatment. Hope it has the same effect for you and your risk is lowered.

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  4. #1744
    Super Moderator Top User po18guy's Avatar
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    Pacific NW, USA
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    In addition to GCSF injections, are there any dose mods being considered to address the neutrophil situation?
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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) 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 GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    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.
    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 aspiration/biopsy reveals 2% cells with 20q Deletion, a form of Myelodysplastic Syndrome, yet a different form than in 2015. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and two of myeloid malignancy lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

  5. #1745
    Administrator Top User Kermica's Avatar
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    In addition to GCSF injections, are there any dose mods being considered to address the neutrophil situation?
    No active discussion at this point, poguy. We have discussed the fact that persistent severely low counts can lead to modification or delay. I am doing all I can to demonstrate that I am taking things seriously in the hope that we can continue full bore without delays. I think it is in my favor that my numbers do bounce back into normal range by Day 21. Today, my WBC was 6.6 and my nuetrophil count was 4.52. Both are solidly in the middle of the normal range.

    John, I have had Nuelasta previously and it worked for me, as well. Ideally, it will do the job once again without inordinate bone aches. They were minor the last time.

    Good health,

    kermica

  6. #1746
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    Glad you're getting the Neulasta, hopefully that will keep your counts closer to where they belong. My onc just scheduled Neulasta for me from the first infusion; my counts never dipped all that dramatically. Pricey drug, though!

    Hoping that you'll see significant improvement from this round. I'm also glad that you're reacting less to the Rituxan; it's nice to be able to speed up the infusion.
    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
    12/2016: Remission continues (>5 years) Down to one checkup/year!

  7. #1747
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    They are good counts to bounce back to, I never saw numbers like those through treatment so it should bode well and not mean any delays, hows the neuropathy? are you noticing any change?
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  8. #1748
    Senior User
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    Nov 2016
    Posts
    101
    Good luck Kermica. I am really hoping that this treatment will work for you even if there hasn't been the dramatic change in nodes. Perhaps it just takes longer sometimes as seems to be the case with others I have read about on the forum. As to your counts, we have a different protocol here. My dad only gets blood work done a few days before his chemo. He has Neupogen shots and they just assume all is working like it should. When he was in the hospital for so long, they did his counts every day and it was interesting to see the exact cycle of the counts lowering and raising.

  9. #1749
    Administrator Top User Kermica's Avatar
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    Thanks, everybody, you know (I hope) how much I appreciate your support. This cycle has been a little different, maybe due to the addition of the Neulasta. I developed moderate pain on Sunday, all left side torso. I have eliminated my heart as a root cause (pulse and BP normal, no sweats, arm pain or other signs of a cardiac event). The pain seems centered just below the diaphragm and radiates to both the front and back. If I were a worrier, I would suspect that something is going on with the spleen. DW is pushing for me to call it in but I am thinking I will just wait until Thursday when I have to go in for labs anyway.

    I am thinking I will call in that morning if the pain still persists as my appointment is not until midday. Thought I could let them know early and let them triage from there if needed. What I do not want to do is call in and have them say "go to the ER" as I do not think that response would be warranted.

    We shall see what we shall see. In the meantime, life is glorious. Hoping all my Aussie friends are doing okay after that monster storm hit your coast yesterday.

    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.

  10. #1750
    Senior User
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    Location
    Monroe, WA, USA
    Posts
    452
    Ouch! Hope you get through this quickly. If your spleen was enlarged significantly, perhaps it's now shrinking down to size, and pain may be associated with rearrangement of connective tissue. I don't recall too much in the way of body pain from R-CHOP, other than some bone pain associated with the Neulasta I had, and even that wasn't too bad.
    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
    12/2016: Remission continues (>5 years) Down to one checkup/year!

 

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