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Thread: Follicular Lymphoma for a while now

  1. #1841
    Administrator Top User Kermica's Avatar
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    New York
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    I have been continuing to research the possibilities for the future. Does anyone know much about a new antibody called Duvelisib from Verastem? Apparantly it had a strong Phase 2 trial for indolent nhl (with a good health profile) that is refractory to Rituximab and chemo. That sounds like it is something that could be right up my alley.

    The only fly in the ointment that I can see is that there is no Phase 3 NHL trial currently listed anywhere that I can find. There is one for CLL, I am hopeful that a trial for refractory iNHL could be in the works. Any info would be greatly appreciated, thanks.

    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. #1842
    Senior User
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    Location
    Colorado
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    Hi Kermica,

    There doesn't appear to be a Phase III trial, perhaps because Phase II wasn't quite what they hoped it would be.
    Here's what I found: http://www.onclive.com/web-exclusive...-ii-inhl-study
    I'm sorry it's not better news.

    Have they tried/explored Zydelig? https://www.zydelig.com/hcp/relapsed...ter%20300x600#
    Researcher, advocate, and caregiver to my son, age 24
    July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
    Sept 2016, Third round of E-CHOP complete;; PET scan NED
    Nov 2016, Sixth and final round of E-CHOP completed
    Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
    Continued to live alone and work two jobs through chemo!
    Dec 2016, PET scan NED
    March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
    March 2017, CT scan shows relapse. Confirmed by PET
    April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
    May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists).

  3. #1843
    Moderator Top User BobInBonita's Avatar
    Join Date
    Mar 2014
    Location
    Bonita Springs, FL USA
    Posts
    1,704
    K,

    When your back is against the wall, sometimes you have to walk around it (or go over it). If there is no phase 3 trial coming in the timeframe that you need/want would your Dr be willing to write the manufacturer asking for a compassionate use trial? As I understand it, the FDA has an expedited review and appproval can be granted in 1-2 months IF the manufacturer supports the use.

    Best wishes that something you want opens up for you.

    Bob
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  4. #1844
    Administrator Top User Kermica's Avatar
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    Jul 2009
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    New York
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    If there is no phase 3 trial coming in the timeframe that you need/want would your Dr be willing to write the manufacturer asking for a compassionate use trial?
    Thanks, Bob, for your response. I hope all with you is as well as can be expected at this time. You are in my thoughts every day, my friend. I appreciate this input and had already thought of asking about off label use but, of course, you need a FDA approval for some use before you can go off label. Your idea is much better and will be one of the things we discuss as we go forward. Thanks again.

    Have they tried/explored Zydelig?
    VMarie, thanks for the link to Zydelig, I have some info on it but this is helpful. At this point, any drug that has demonstrated efficacy in combating recurrent iNHL is of interest to me. I want to go into the next phase of things as informed as possible regarding these options. My plan is to move the discussion out of the exam room and into a conference room so that the dynamic is changed. I have a family meeting scheduled with the care team in October and will take over that agenda to make sure mine is heard. Thanks again.

    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.

  5. #1845
    Senior User
    Join Date
    Sep 2016
    Location
    Colorado
    Posts
    236
    That sounds like a good plan, Kermica.
    Researcher, advocate, and caregiver to my son, age 24
    July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
    Sept 2016, Third round of E-CHOP complete;; PET scan NED
    Nov 2016, Sixth and final round of E-CHOP completed
    Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
    Continued to live alone and work two jobs through chemo!
    Dec 2016, PET scan NED
    March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
    March 2017, CT scan shows relapse. Confirmed by PET
    April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
    May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists).

  6. #1846
    Experienced User
    Join Date
    Nov 2016
    Posts
    86
    Kermica, there is a website called Patients Against Lymphoma. It seems to keep up on all the latest clinical trial, studies and info. It might be a good resource for you as they collect information from many sources.I was just reading about a trial for refractory FL that had really good response rates. The drug names escape me, but I think it was Galen, which is a better version of rituxiamab and maybe lenolidomide.

  7. #1847
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Location
    New York
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    Jango, thanks for the tip, it was very helpful! I know have a list of 83 trials that are currently recruiting for indolent NHL patients who are refractory or relapsed. The list also excluded studies related to SCT as I continue to look for alternatives to that path. The list will be joining me at my next oncology meeting, should be interesting, to say the least.

    Thanks again!

    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.

  8. #1848
    Senior User
    Join Date
    Sep 2011
    Location
    Massachusetts
    Posts
    277
    Kerm. I am thinking of you all the time and wishing you had more success with treatment. Hopefully they can find you a trial that will succeed. Just know you are in my thoughts. Your support and strength has helped me more than you will know

    Best
    Robert
    64 US Massachusetts Male
    dx 23 days ago B Cell phenotype, with features consistent with follicular lymphoma grade 1 stage iV
    Enlarged notes in groin, abdomen, neck
    Treatment Bendamustine 2 day treatment every month for 6 months treatment started 9/22/2011
    Was supposed to include Rit but i got a deadly allergic reaction to it.
    Remission since March 2012
    Relapse June 2015
    Port Installed July 13, 2015
    Appointment with Dana Farber on July 17 to set up chemo schedule
    Going to try Rituxan again with a different infusion protocol
    Bendamustine as well for 6 months

  9. #1849
    Senior User Kimv's Avatar
    Join Date
    Dec 2015
    Location
    Chico, ca
    Posts
    390
    Kermica, I am sending you positive thoughts and good energy your way. I hope you can get a handle on this soon...I know how hard it can be when things are up in the air. You are a true warrior, just continue to push for answers. Many good studies are underway and new treatments will be approved soon. 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❤️💜💚💛💙

  10. #1850
    Senior User
    Join Date
    Sep 2016
    Location
    Colorado
    Posts
    236
    Hi Kermica,

    I thought of one other resource that might be helpful. Uptodate.com now offers subscriptions (pro version) for just $20 for one week of full access. Easy to cut/paste all the info in a word doc and read at your convenience. The good thing about uptodate is they claim to update frequently (vs. NCCN guidelines which are just updated once a year) so should have the latest info... Here's the link: https://www.uptodate.com/contents/tr...cular-lymphoma
    Researcher, advocate, and caregiver to my son, age 24
    July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
    Sept 2016, Third round of E-CHOP complete;; PET scan NED
    Nov 2016, Sixth and final round of E-CHOP completed
    Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
    Continued to live alone and work two jobs through chemo!
    Dec 2016, PET scan NED
    March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
    March 2017, CT scan shows relapse. Confirmed by PET
    April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
    May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists).

 

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