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Thread: Newly Diagnosed with Follicular Lymphoma

  1. #91
    Senior User Kimv's Avatar
    Join Date
    Dec 2015
    Posts
    422
    Hi lucky, congrats on almost being done with r-chop. My hands got tingly and there is a numb spot on my left foot. Doctor said as long as it's not interfering with my normal function he would continue on wit planned treatments. Now that treatments are over I have some residual stiffness in my hands but the tingling is gone.
    Thinking of you on this fine day in hopes your scan comes back negative! All the best. Kim
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

  2. #92
    Latest update:

    I completed my R-CHOP therapy on 7/8/2016 and followed up with a PET scan six weeks later. The PET shows that the R-CHOP/immunotherapy resolved (nearly?) all of my large B-cell lymphoma. I still have a small hot spot on the large tumor, which is now less than a quarter of it's original size. My oncologist says it's likely just metabolic activity due to healing, but wants to do another biopsy just in case. If it shows LBC we can jump on it right away with another therapy. If it shows negative, we'll follow up with another PET in a few weeks to see that it's getting smaller.

    Overall, I'm disappointed that I didn't get the "all clear" with this last PET, but I'm hopeful that the new biopsy comes back clear.
    Male - Age 52
    12/2015: CT scan for abdominal discomfort; Single 16cm x 10cm x 8cm bulky mass located in left abdomen
    01/2016: Core needle biopsy confirms NHL Follicular Lymphoma, Grade 1-2, Stage 1, bulky
    02/2016: PET scan shows another 1.5cm hot spot in right abdomen
    Oncologist suggests 4-6 courses of Bendamustine and Rituxan with possible mop up radiation. Recommends second opinion.
    Second opinion from Stanford Med Center recommends an excisional biopsy. <--Don't bother with needle biopsies!
    03/2016: Excisional biopsy shows Transformed NHL FL, Grade 3B, Stage 2, bulky
    6 cycles of R-CHOP and Rituxan, 21 days apart
    04/15/2016: Second R-CHOP infusion completed. Neulasta injection to increase WBC.
    07/08/2016: Completed last round of R-CHOP.
    08/15/2016: PET still shows small hotspot; Ordered biopsy
    09/12/2016: Biopsy shows negative with full remission!

  3. #93
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,583
    Hey Lucky, it is good to hear from you. I'm glad to hear that treatment has been completed and that your disease has been brought so close to being successfully managed. To me, your news is much more positive than not as transformed fNHL is a tough nut to beat and it sounds like you are mostly there, at worst and you are there, at best. Good luck with the biopsy, I hope it is all good news for you. If not, we will still be here as needed.

    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. #94
    GREAT NEWS!

    My incisional biopsy came back negative for viable Large B-Cell Lymphoma. The remaining mass is necrotic (dead) tissue with some histiocytes that are cleaning up that tissue. I'm relieved beyond belief! I'll be following up with another PET scan the end of October.

    Thank you all for your support and well wishes! This platform has been instrumental to my mental health and well being. Thank you!
    Male - Age 52
    12/2015: CT scan for abdominal discomfort; Single 16cm x 10cm x 8cm bulky mass located in left abdomen
    01/2016: Core needle biopsy confirms NHL Follicular Lymphoma, Grade 1-2, Stage 1, bulky
    02/2016: PET scan shows another 1.5cm hot spot in right abdomen
    Oncologist suggests 4-6 courses of Bendamustine and Rituxan with possible mop up radiation. Recommends second opinion.
    Second opinion from Stanford Med Center recommends an excisional biopsy. <--Don't bother with needle biopsies!
    03/2016: Excisional biopsy shows Transformed NHL FL, Grade 3B, Stage 2, bulky
    6 cycles of R-CHOP and Rituxan, 21 days apart
    04/15/2016: Second R-CHOP infusion completed. Neulasta injection to increase WBC.
    07/08/2016: Completed last round of R-CHOP.
    08/15/2016: PET still shows small hotspot; Ordered biopsy
    09/12/2016: Biopsy shows negative with full remission!

  5. #95
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,583
    See, you really are a lucky guy, aren't you! This is great news, congratulations! Continued 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. #96
    Senior User Kimv's Avatar
    Join Date
    Dec 2015
    Posts
    422
    That's fantastic! I'm so happy to hear the good news. Time for a celebration lucky guy❤️ Stay well. Sending hugs your way. Kim
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

  7. #97
    Time for a much belated update.

    I just had my three year post-cancer follow-up and I'm still cancer free. Labs came back great and I had my first CT scan since being cleared - it's all good. The mesenteric mass is now 3.7 x 1.5 cm. It is smaller than the last CT scan done on 05/05/2017 at Stanford, 7.2 x 2.8 cm.

    Tomorrow is my 56th birthday and this is a wonderful present! Best wishes to everyone.
    Male - Age 52
    12/2015: CT scan for abdominal discomfort; Single 16cm x 10cm x 8cm bulky mass located in left abdomen
    01/2016: Core needle biopsy confirms NHL Follicular Lymphoma, Grade 1-2, Stage 1, bulky
    02/2016: PET scan shows another 1.5cm hot spot in right abdomen
    Oncologist suggests 4-6 courses of Bendamustine and Rituxan with possible mop up radiation. Recommends second opinion.
    Second opinion from Stanford Med Center recommends an excisional biopsy. <--Don't bother with needle biopsies!
    03/2016: Excisional biopsy shows Transformed NHL FL, Grade 3B, Stage 2, bulky
    6 cycles of R-CHOP and Rituxan, 21 days apart
    04/15/2016: Second R-CHOP infusion completed. Neulasta injection to increase WBC.
    07/08/2016: Completed last round of R-CHOP.
    08/15/2016: PET still shows small hotspot; Ordered biopsy
    09/12/2016: Biopsy shows negative with full remission!

  8. #98
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,345
    Amen! Thanks for checking back in!
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") 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 TEC (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) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    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 measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    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.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

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

  9. #99
    Regular User
    Join Date
    Jun 2019
    Posts
    11
    Thank you for sharing. I always check this forum since my mom have been diagnosed.

  10. #100
    Great news!!!

 

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