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Thread: Follicular Lymphoma for a while now

  1. #2331
    Moderator Top User
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    Feb 2011
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    584
    I'm glad you're making progress towards finally killing off the beast once and for all. All of that pre-planning must be pretty wearing, but you sure seem to be surfing on top of that wave of paperwork!

    Interesting about the funeral arrangements - wise, but you won't be needing them. Several months after I went into remission, my wife told me that when I was diagnosed, she started looking into cheap, biodegradable caskets for me and whatever permitting might be needed to plan me on our 5 acres. During my treatment I was wondering why my legal-secretary wife was practicing so much with our backhoe! We get a good laugh out of it now. Ha. Ha.
    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!

  2. #2332
    Administrator Top User Kermica's Avatar
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    Thanks, everyone, as always. As to the planning for what is certainly a certainty, my wife and I had decided long ago that it is a sensible thing to do but had never gotten around to actually doing it. So, this is something on our to do list which we would both like to cross of of that list. I was responsible for my dad's arrangements following his death at the hands of a drunk driver many years ago and it was very difficult to do the things that needed doing following his sudden loss.

    As to the transplant, for now I am thinking only of doing what I can to prepare for it and frankly hoping that I am cleared to proceed. Without going through the list, there are valid reasons for this concern. For today, thinking good thoughts for a NED PET scan on the 26th or I believe everything stops. One day at a time has real value in times like this.

    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.

  3. #2333
    Newbie Regular User
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    Sep 2018
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    Hi Kermica, my fingers crossed for you! I know the auto transplant isnít easy but at least itís much more tolerable and lower risk than allo. Do you have a date set for the conditional chemo? If thatís somewhat soon, hopefully by summer, you can go relax with a beach vacation!

    Pontagf

  4. #2334
    Senior User
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    Mar 2017
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    Not much longer before you know if R-CHOP has done its job... I will keep assuming all will go according to plan.
    Wishing you all the equanimity you need to get you to that date. Seems you know how to keep busy!
    PBL

  5. #2335
    Administrator Top User Kermica's Avatar
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    Thanks again, one and all! I saw the urologist today, he wants a PSA test stat and will do a scope of the bladder on the 27th. I spoke to Dana Farber and they are requesting results from them. DF also cleared me to start dental work if needed as long as my counts are good. They also sent a second request for a BMB to my onc today, I will followup in the morning. So nest week will be a PET on Tuesday, bladder scope on Wednesday and scan results on Thursday. My hope is to fit the BMB in on Thursday when I am in to the oncologist for results anyway.

    Fun, fun, fun...

    Good health,

    kermica

  6. #2336
    Super Moderator Top User Baz10's Avatar
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    May 2011
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    A full calendar K.
    Similar to ourselves with 3 scheduled visits so far this week and blood test again for the better half tomorrow,
    Keep on as po keeps telling me keeping on.
    Good luck.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  7. #2337
    Administrator Top User Kermica's Avatar
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    Thanks, Baz, keepin on is what it will be as the alternative choices don't present much from what I can see. That said, if I fail to qualify for the transplant there are still choices which is good.,

    Next week should be a hoot: Bone marrow biopsy first thing Monday, PET/CT first thing Tuesday, Bladder scope first thing Wednesday and Pet results (and BMB, I hope) on Thursday morning. We also have the attorney and funeral director scheduled and my wife has minor eye surgery on Tuesday.

    I have confirmed with Dana Farber that the critical data point for moving forward is a negative (as in NED) marrow sample. Second is the PET results. Should be a fun week.

    Good health,

    kermica

  8. #2338
    Super Moderator Top User Baz10's Avatar
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    May 2011
    Posts
    5,306
    Cancel the funeral director, certainly NOT appropriate in your case at this time and hopefully for decades to come.
    attorneys or lawyers are far to costly anyway.
    As my GP says, quite often in my case
    ”The only time to be late is for your own demise”
    Yep my friend, you have a full schedule to which I only say
    Yughh.
    Good luck to you and the better half.
    Im sure with good grace and fortitude you will breeze through.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  9. #2339
    Senior User
    Join Date
    Jan 2015
    Posts
    238
    wishing you all the best during your extremely busy next week! I understand what you are saying about dealing with the aftermath of your father's death and all that entails( and emotionally I'm sure even more difficult). My husband's father passed away in January and his father had taken care of so many things prior to his death that it will make my husband's executor duties easier. But even so, there is so much to do. So now, we are going to do all we can to help ease our children's path - meeting with the attorney this week! Take care next week - really hoping everything looks good and your scans are clean!!

  10. #2340
    Experienced User
    Join Date
    Sep 2017
    Posts
    90
    Funeral scmooneral. Positive outlooks are even more for the people who love us than for us.

    Very shortly after I was diagnosed, I quipped that the local mountain ravens would provide my hospice care if needed. I turned around and my wife was crying uncontrollably. That's when I realized this is easier for us than it is for them.
    Age 55 at Diagnosis
    6/2017 - Fell off a ladder. Incidental finding
    7/2017 -CT shows "Innumerable" enlarged nodes up to 2.2cm in mesentery, retroperitoneal, mediastinum, SCV node. No symptoms blood work normal--including LDH.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. SUVs to 9.3. Bone marrow biopsy negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts to zero after treatment. Neulasta moving fwd. Neuts rebound.
    10/2017 - Mid point CT shows treatment effective. RCHOP continues.
    11/30/17 - RCHOP concludes
    1/2018 - PET shows zero SUVs and complete response to treatment. Rituxan maintenance begins
    7/2018 - CT shows NED. New coronary artery calcification to be investigated.

 

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