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Thread: Fighting lymphoma for 40 years

  1. #1
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    Fighting lymphoma for 40 years

    My first lump grew 40 years ago. I was 30 years. I was watching it and it went into spontaneous remission. Then 14 yeas later I was diagnosed with dlbcl. It was exactly in the same lymph node as the first lump. The lymphoma relapsed again and again but as FL grade 1-2. Now it's back again and growing pretty fast as I did not have as many symptoms 2 months ago. Now I have shortness of breath, pain and pressure in the chest, dry cough. I had 2 surgeries on my bladder and ureter, last one a year ago, they caused sepsis 3 times. I recovered, but now I am not sure that I can take even bendamastine. It caused high heart rate (200) in the past.
    Tomorrow I have an echogram and on Friday a CT scan. I was thinking about RR treatment. Did anybody here have it?
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.

  2. #2
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    Hello fighterm,
    So sorry to read your news. My experience with FL is nowhere near your forty years, and I have only had R-CHOP + 2-year maintenance Rituximab, so cannot directly answer your question.
    Regarding your issues with sepsis, I was just wondering after reading your signature history, whether Rituximab had been considered as playing a part in those occurrences?
    I assume "RR" stands for Rituximab monotherapy followed by Rituximab maintenance, - which, as I understand it, can be used for relapsed FL, but could put you at risk for more infections (plus, if it does turn out to be yet another relapse of the same CD20+ lymphoma, and since you were relatively recently receiving Rituximab, that might indicate that your lymphoma is no longer responding sufficiently to that mAb).
    However, if your tumor seems to be growing fast, I imagine it could be relapsed DLBCL or transformed FL, which would require more drastic measures - perhaps a fludarabine-based regimen followed by an autologous stem cell transplant?
    I wish you great fortitude as you once again face the tests, waiting, and uncertainty ahead.

    PBL
    Last edited by PBL; 03-19-2019 at 05:37 PM.

  3. #3
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    So sorry to learn that it's back again, and that you are experiencing symptoms. Hopefully the CT will find that it's not terribly widespread - but even if it is, treatment will still likely be effective.

    There have been some folks on this board who have done "R Squared" - Rituximab and Revlimid. It's quite a potent combo. If I recall, it does have some side effects in the way of possible nausea and fatigue, but they all have that.
    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!

  4. #4
    Administrator Top User Kermica's Avatar
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    fighterm, I'm very sorry that the lymphoma is back and can relate. I think the CT scan will give you a lot of useful information for decision making and my hope is that it is FL and can be knocked down again. I have not had R squared but am deep in the treatment pool with a stem cell transplant next on the list.

    I wish you well and may this round go easily for 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.

  5. #5
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    Quote Originally Posted by PBL View Post
    Hello fighterm,
    So sorry to read your news. My experience with FL is nowhere near your forty years, and I have only had R-CHOP + 2-year maintenance Rituximab, so cannot directly answer your question.
    Regarding your issues with sepsis, I was just wondering after reading your signature history, whether Rituximab had been considered as playing a part in those occurrences?
    I assume "RR" stands for Rituximab monotherapy followed by Rituximab maintenance, - which, as I understand it, can be used for relapsed FL, but could put you at risk for more infections (plus, if it does turn out to be yet another relapse of the same CD20+ lymphoma, and since you were relatively recently receiving Rituximab, that might indicate that your lymphoma is no longer responding sufficiently to that mAb).
    However, if your tumor seems to be growing fast, I imagine it could be relapsed DLBCL or transformed FL, which would require more drastic measures - perhaps a fludarabine-based regimen followed by an autologous stem cell transplant?
    I wish you great fortitude as you once again face the tests, waiting, and uncertainty ahead.

    PBL
    Thanks for your reply. I am thinking between ritaximab alone or with revlimid. Benda was not easy on me. Another possibility is a trial of a tyrosine kinase inhibitor with obinutuzumab. My sepsis 3 times was due to a very complex surgeries on my bladder involving creating a new ureter from my intestines. That was long after I finished rituximab, it's just my gut bacteria got into my blood stream, 3 different types of gut bacteria. This was due to the surgeries I had. All these surgeries woke up my napping lymphoma, so now its growing pretty fast.
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.

  6. #6
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    Defens, Thanks for your reply. If its only nausea and fatigue without heart toxicity then it's OK. Somehow I feel that I have liquid around my heart or lungs and my heart cannot beat normally. I have difficulty breathing. I felt great even 1.5 months ago.
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.

  7. #7
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    Hi Kermica, thanks for your reply. Unfortunately I cannot do any heavy chemo that is required for SCT or CAR T cells. So I am stuck with temporary solutions hoping for immunotherapy approval as a next treatment for me. There are several studies. In one study there were local radiotherapy to solitary lymphoma nodes and intranodal injections of low-dose rituximab (5 mg), immature autologous dendritic cells, and granulocyte-macrophage colony-stimulating factor at the same site. The treatment was repeated 3 times targeting different lymphoma nodes. In another study low-dose R was combined with autologous IFN-DC, administered by intra-nodal injections. Another study is done by Dr. Levy at Stanford. It includes intratumoral injection of CpG, agonistic for TLR9, radiation to the same node and anti-ox40. I am wondering if anybody on this forum tried any of these immunotherapies.
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.

  8. #8
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    Is Zevalin an option for you? It is a one dose treatment that can be very effective.
    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!

  9. #9
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    Quote Originally Posted by Defens View Post
    Is Zevalin an option for you? It is a one dose treatment that can be very effective.
    Thanks. I will ask.
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.

  10. #10
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    hi this came through today and whilst a small study group its showing some success for heavily treated patients - Duvelisib,

    https://www.cancernetwork.com/leukem...8-D4417393208F

    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.

 

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