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Thread: Introduction and Follicular Lymphoma Question

  1. #51
    Senior User
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    Many RCHOP patients, me included, found that the treatment does progressively induce fatigue. And it wasn't just a mild sleepy feeling - when it hit, I had to go lie down right now. Once I was done, I bounced back fairly quickly within a few weeks.

    i did have some slow hair regrowth about midway through my treatment. I'm glad that your treatment appears to be working very well!
    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
    12/2016: Remission continues (>5 years) Down to one checkup/year!

  2. #52
    Hi , re hair the odd person does experience some growth, not often but it does happen, re the fatigue, its a wiped out feeling and as Defens explains, having a sleep is the only way to deal with it, I used to have a blanket that I would snuggle under and would be out cold within minutes and would sleep for anything from half an hour to an hour or so. Fighting it only seemed to make it worse, so you do learn to go with what your body is telling you.
    Have they got any thoughts on that growing node?

    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.

  3. #53
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    Sep 2017
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    I guess I should be glad I'm not experiencing any nausea. Still, four days in-house is a record for me. Will try to get out a bit tomorrow--maybe take the dog for a walk.

    Re the thyroid nodule, it's still considered "within normal limits" by virtue of the fact that it's under 1.5cm--and I'm over 35 y.o. Apparently, this is the concern threshold here in the US. Still, the fact that it has grown from 8mm to 12mm in a short period is curious, I suppose. My oncologist doesn't seem too worried at this point, but it will be measured again when I have my post-chemo PET in late December. Again, it didn't have any uptake value on my PET pre-chemo.

  4. #54
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    Quote Originally Posted by johnr View Post
    ...re the fatigue, its a wiped out feeling and as Defens explains, having a sleep is the only way to deal with it, I used to have a blanket that I would snuggle under and would be out cold within minutes and would sleep for anything from half an hour to an hour or so. ...

    John
    Boy is that ever true! One afternoon (I work from home) I thought, "Boy, I'm wiped out! I think I'd better lay down for 20 minutes." I woke up three hours later!

    Regarding the node-of-concern. Your immune system is still functioning, even during treatment. It could very well be that this node is dealing with an infection, or has become reactive for some reason. Your oncologist appears to be on top of it, so it probably isn't something to worry about too much.
    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
    12/2016: Remission continues (>5 years) Down to one checkup/year!

  5. #55
    Super Moderator Top User po18guy's Avatar
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    8,499
    Quote Originally Posted by Ifelloffaladder View Post
    FINAL DIAGNOSIS: Definitive classification is challenging. Some of the areas of the lymph node have a nodular architecture and variable proliferative rate, consistent with follicular lymphoma of varying grades ranging from WHO grade 1 to WHO grade 3a. However, other areas have a diffuse architecture with a high proliferative rate, and are highly concerning for large B cell lymphoma. If definitive classification is required, consider excisional biopsy.
    You can see the challenge to pathology. In my case, it was so nuanced that my having a cancer history (or not) affected the pathologist's decision. Imagine that. I don't know/remember who your hematologist is, but I would hope that they consult with others in the B-Cell arena.
    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 TREC (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.
    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 measureable - 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.
    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.
    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 of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Two lymphoid malignancies plus a myeloid malignancy lend a certain symmetry to the journey.

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

  6. #56
    Experienced User
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    Sep 2017
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    I have very strong faith in my hemo/onco. I have challenged him about my pathology and, in addition to the results given by the original Path lab, he conferred with UW Pathology about my results--particularly MYC extra copies and protein expression. I like doctors that are willing to reconsider. Everything I've read agrees with his RCHOP protocol--get the diffuse/aggressive; Rituxan maintenance for the remaining indolent, if any. Sure, I would have preferred an excisional biopsy--but no easy nodes were offering up, and those that were candidates (e.g. SCV) were problematic. And, of course, there would have been insurance companies to convince...

    Appreciate your knowledge.

    https://www.multicare.org/doctors/john-jack-keech-jr/
    6/2017 - Fell of a ladder. ER CT confirms no broken back. Incidental finding--ER Doc suggests I get enlarged lymph nodes in abdomen examined.
    7/2017 - Add'l CT to confirm lymphandopathy. Confirmed. "Innumerable" enlarged nodes up to 2.2cm in mesentery, retroperitoneal, mediastinum, SCV node. Suspected Lymphoma--but Sarcoidosis possible as my wife has this auto-immune condition. No lymphoma symptoms of any kind. All blood work is normal--including LDH. Feel fine.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin grades WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. Bone marrow biopsy performed - negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts drop to zero after treatment. Neulasta given and will be part of each treatment moving fwd. Neuts rebound.
    10/2017 - Mid point CT post round 3 reveals lymphandopathy is gone and treatment appears to be effective. RCHOP continues until November 30, 2017

  7. #57
    Experienced User
    Join Date
    Sep 2017
    Posts
    56
    Well, I completed R-CHOP on November 30th. Round 6 was difficult--no nausea--but very weak and fuzzy for a good two weeks after. Feeling much better now. Back to riding my mountain bike and light running hills. Going skiing next week. I still like taking naps.

    Had my follow-up PET this past Thursday and, great news, the results my doc shared today show a complete response to chemo with zero metabolic activity in the lymph nodes that lit up at SUV 9.2 back in July. (No new activity either.) So, I'm in remission and will be on Rituxan maintenance every two months moving forward. Very happy--but in a tempered kind of way. Like the monster is still out there.

    A big thanks to John, Defens, pjs, David, and, of course, the moderators Po18 and Kermica for all your advice, prayers and support. I will continue to give updates on my condition and offer my support here for anyone who is similarly enduring.

    Defens, let me know when you're ready to hike!

    Brian
    6/2017 - Fell of a ladder. ER CT confirms no broken back. Incidental finding--ER Doc suggests I get enlarged lymph nodes in abdomen examined.
    7/2017 - Add'l CT to confirm lymphandopathy. Confirmed. "Innumerable" enlarged nodes up to 2.2cm in mesentery, retroperitoneal, mediastinum, SCV node. Suspected Lymphoma--but Sarcoidosis possible as my wife has this auto-immune condition. No lymphoma symptoms of any kind. All blood work is normal--including LDH. Feel fine.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin grades WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. Bone marrow biopsy performed - negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts drop to zero after treatment. Neulasta given and will be part of each treatment moving fwd. Neuts rebound.
    10/2017 - Mid point CT post round 3 reveals lymphandopathy is gone and treatment appears to be effective. RCHOP continues until November 30, 2017

  8. #58
    Administrator Top User Kermica's Avatar
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    Jul 2009
    Posts
    6,205
    Had my follow-up PET this past Thursday and, great news, the results my doc shared today show a complete response to chemo with zero metabolic activity in the lymph nodes that lit up at SUV 9.2 back in July. (No new activity either.) So, I'm in remission and will be on Rituxan maintenance every two months moving forward. Very happy--but in a tempered kind of way.
    Great news, Brian, congratulations on achieving remission! May it last all the rest of your days and may you have, from here, a normal, cancer free life.

    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.
    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 iliax 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.

  9. #59
    Hi, thats great news and remember many can go years and years, so get back to enjoying life, have fun skiing I used to love travelling to New England to ski for 2 to 3 weeks, travelling around the various resorts, where are you off to?

    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.

  10. #60
    Experienced User
    Join Date
    Sep 2017
    Posts
    56
    John, there is a ski area just over an hour from our home called "Crystal Mountain." It opened the year I was born and I've been skiing there ever since. And hopefully for many more!

    https://www.crystalmountainresort.com/

    Given my wife's struggles with Sarcoidosis that began back in February, and my lymphoma, we are going to destroy any remaining 2017 calendars we come across and we have booked a trip to Fiji this coming June. No skis--just snorkeling stuff.
    6/2017 - Fell of a ladder. ER CT confirms no broken back. Incidental finding--ER Doc suggests I get enlarged lymph nodes in abdomen examined.
    7/2017 - Add'l CT to confirm lymphandopathy. Confirmed. "Innumerable" enlarged nodes up to 2.2cm in mesentery, retroperitoneal, mediastinum, SCV node. Suspected Lymphoma--but Sarcoidosis possible as my wife has this auto-immune condition. No lymphoma symptoms of any kind. All blood work is normal--including LDH. Feel fine.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin grades WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. Bone marrow biopsy performed - negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts drop to zero after treatment. Neulasta given and will be part of each treatment moving fwd. Neuts rebound.
    10/2017 - Mid point CT post round 3 reveals lymphandopathy is gone and treatment appears to be effective. RCHOP continues until November 30, 2017

 

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