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Thread: Newly Diagnosed with Follicular Lymphoma

  1. #1

    Post Newly Diagnosed with Follicular Lymphoma

    I'm grateful that I found this site while researching my disease. I'm 52 years young and was just diagnosed with Follicular Lymphoma.

    I began feeling chronic abdominal discomfort in October 2015 that felt like someone punched me in the stomach. After about a month of taking Tylenol, I went into my GP who examined me and ordered a CT scan. The scan showed a 13 cm x 9 cm x 11 cm solid mass on my left side just under my diaphragm suggesting NHL. My GP referred me to a general surgeon who said my blood work looked good, so he thought it might be a benign lipoma. He ordered a CT guided biopsy which confirmed the following:

    Lymph node, abdominal, core biopsy
    - Follicular lymphoma, predominantly diffuse pattern, grade 1-2
    - Flow cytometry: Abnormal kappa monotypic B-cell population with expression of CD19, CD10, CD20, FMC7, CD38, and lacking CD5
    - FISH studies: Positive for the t( 14;18 ) IGH-BCL2 translocation

    Comment: Although occasional nodular areas of follicular dendritic networks are seen in the background, CD20+ B-cells are present in a diffuse pattern in the core biopsy. No evidence of transformation to large cell lymphoma is seen in the biopsy.
    The surgeon conferred with some oncology colleagues and I've been referred to a radiology therapist. I'll be meeting with him on Tuesday. I did speak with him yesterday and he said he will likely provide a third opinion after reviewing my CT scan and pathology reports, and likely performing a PET scan and more labs. He said it's highly unlikely I will need surgery, that radiation and possibly chemo will melt the tumor away. At one point in our conversation he used the term, "curable".

    I'm generally positive so far for my prognosis. FL is a slow growing form of NHL and it's been detected fairly early. The only wildcard (in my mind) is the size of existing tumor.

    Questions for the group:
    While I'm generally optimistic, my wife is worried. I'm staying positive. How else can I support her?
    For others who have FL, what types of treatment have you had? Radiation? Chemo? Both?
    I'm generally in good health and can exercise. How can I best prepare ahead of time for treatment?

    Thank you all for your support.

  2. #2
    Administrator Top User Kermica's Avatar
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    luckyguy, welcome to the place none of us want to be but many come to value. All in all, while one never wants a diagnosis of cancer, yours is about as good as things could be if it has to happen. I received the same diagnosis as you have back in September 2008. I did 40 rounds of radiation to try and kill it outright but was not successful. We then did chemo a few years later and I have been in remission for the last couple of years.

    Grade 1-2 is better news than a higher grade would be as it has fewer characteristics of more aggressive lymphomas. One location is also good as it means Stage 1 which is the stage of the disease when a cure is possible. Given the size of your tumor I suspect they may want to do a combination therapy of chemo such as Bendamustine, a monoclonal antibody such as Rituxan and then a round of radiation to mop up. It isn't the easiest path ever laid out but it is very doable, especcially for a young guy like you.

    So, welcome to our little club though I am sorry you have a reason to join us. You will find that the folks on this site are ready to support you, listen to your rant when you need to vent and to provide knowledge when that is 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.

  3. #3
    Thank you, kermica.

    Glad to hear that your are in remission. Gives me even more hope for a cure.

    You answered one of my other questions (sure to have more) about whether chemo or radiation is usually done first. I've read that radiation therapy has a few less side effects, but having both done causes both side effects to be more intense. Did you find that to be the case?

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Sorry to welcome you here under these circumstances. With follicular lymphoma, what is sought out is a long-term remission, as it is not considered to be a curable cancer. However, medicine is now to the point where follicular lymphoma, and other indolent blood cancers are considered to be chronic, manageable illnesses. As to chemo vs. radiation, many of chemo's side effects you recover from, while radiation tends to produce more long-term side effects.

    As to the understandable fear or anxiety regarding chemotherapy, over the past seven years, I have received 14 different chemo drugs (at least four of them twice) and three non-chemo biological drugs. I am still here and still happy to be alive. But, I have dealt with a much different lymphoma, so will defer to the follicular specialists here.
    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.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    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.

  5. #5
    This disease that we have can be treated and even sometimes cured. New things are being discovered all the time. It is hard on our caregivers because really all they can do is support us and we really have to do the work and go through everything. Please reassure her that there are many who live with only a chronic condition or are cured. And truthfully the doc's don't know everything about our prognosis. They gave me at the most a year, six years ago. Hugs and good wishes.
    Female ,age 70, Diagnosed Jan 2010
    Primary CNS DLBCNHL
    Treatment every 6 weeks with High dose MTX and Rituxan for 9 months.
    Tumors shrunk and one was gone in 4 months and the larger one left some brain damage but has not become active as shown on MRI since Aug 2010.
    Since 2012 monthly Rituxan
    High Dose MTX and MRI every 4 months.
    June 6, 2014 NED
    No more chemo 6/2014

  6. #6
    Senior User
    Join Date
    Nov 2014
    Posts
    242
    "Welcome" to our special club. Whilst I can't help with the technical side of your diagnosis, you have asked how to help your wife! Trying to see it from a partner's perspective?
    Keep her well informed. If she or for that matter you are searching the Internet for information just take care not to be dragged into reading text that is old and perhaps not relevant or paying too much attention to that word "prognosis" and then the number game.
    Include her in Drs appointments, we recommend using a notebook to record questions, answers and treatments. Perhaps you could ask her for help. Ensure she is feeling that she can ask questions as well. Discuss all with her. Generally women just "want to know" everything, I can say that! She may worry that you are not telling her everything or how YOU are feeling in case you are concerned at her reaction. If there is one thing that lymphoma gives us....yes gives us.....is the opportunity to look at ourselves with eyes wide open, to assess where we are in the scheme of things, and to look forward to what we can do to maximize our enjoyment in life. Let her know you value her and need her with you. Talk to her....do not exclude her. At one stage I was inclined to hold back not wanting to upset my family....they know!
    Gawd that was a ramble. Keep us in the loop and know that we are to help when we can.
    68 yo "lady" reasonably fit except for chronic cluster headaches
    October 2014 Developed lumps in skin on chest wall 4 within week, 1 on top of leg
    Body scan showed only the 5 lesions, later PET scan showed more but all skin related.
    Full fresh biopsy of first lesion: non Hodgkin Lymphoma: Diffuse large B-Cell Lymphoma with high Ki-67 prol index >95%. Final diagnosis: Primary cutaneous diffuse large B cell lymphoma leg type. Bone marrow biopsy clear. No double hit.
    Treatment R CHOP x6
    17 March 2015 CAT and PET scan clear REMISSION!
    2 sessions IV Methotrexate to augment R CHOP.
    11 April 2015 all treatment complete
    August 2015 First check up Bloods all OK no scans needed
    October 2015 "lumps" bloods OK! Ultrasound show lipomas, otherwise all clear.
    March 2016, 69 now, 1 year remission!
    May 2016, official 12 month check, bloods good, new lumps....watch and wait...happy as!

  7. #7
    Senior User
    Join Date
    May 2014
    Posts
    450
    Luckyguy, I had R bendomustine for my last relapse of FL that I finished a year ago. Now I am doing R maintenance every 3 months. It's a manageable disease. The only concern is that it can transform over time to DLBCL. I was lucky that it (Large cell) never came back. BTW, yours biopsy looked very much like my last biopsy. The important thing is that you have all the right antigens for immunotherapies, like CD20 for rituximab, but also for newer drugs that are in trials. Your mass is pretty big. Are they going to radiate it? For smaller masses they just do r-benda. A very important advice. Drink a lot of water to protect your urinary system (kidneys and bladder). Nobody mentioned it to me and I got bladder cancer (secondary). It's not only for protection from chemo drugs, but also from a huge amount of cellular debris that is produced from your dead cancer cells. It looks like a 1 lb or 2 lbs of dead meat will be released into your blood.
    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
    Thanks Dusker. That helps.

  9. #9
    Fighterm, thanks for that very important advice - totally makes sense, but not something I would have thought about. My dad had bladder cancer that eventually ended with a radical cystectomy. Thankfully he's doing well after that.

  10. #10
    Dusker is so right. I was my husband's caregiver. I went to every appt., eventually having to drive as his chemo affected him more. I taped each visit on my IPad but only on record. I kept a journal. I researched but not online. My husband has PTCL NOS. His chemo was not pleasant and he went through a lot. When chemo was over, he bounced back quickly and has been in remission 7 months now. I am still a bit shell shocked. Being disabled, it was difficult to care for him but for better or worse. He in return has been very kind and very thoughtful. Her understands ny anxiety, which is better. Most of all he hugs me a lot which is very comforting.
    I know more about PTCL then Al does. He prefers to ask questions only and I answer only those.
    His fight is over. How brave he was. 47 years of love.

 

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