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Thread: Introduction and Follicular Lymphoma Question

  1. #71
    Update, the recovery continues. Spent most of June in Fiji with my wife--snorkeling and waterfall hiking--and have been climbing around in the local mountains two or three days a week before and since! I feel strong, but still have occasional mild-to-moderate abdominal pain where my largest mysentery tumors used to reside. Apparently this is common?

    Next week is my six month CT scan and cardiac ultrasound--followed the week after with Rituxan maintenance. Good news will mean we're off to Alaska for some camping with our dog.
    Age 55 at Diagnosis
    6/2017 - Fell off a ladder. Incidental finding
    7/2017 -CT shows "Innumerable" enlarged nodes up to 2.6cm 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.
    7/2019 - CT shows NED. Coronary calcification is gone.

  2. #72
    Interesting results, I remain in remission with no evidence of recurrent or new lymphandopathy. Very happy with this news! However, CT scans being what they are, the report goes on to list areas of concern--like a 14mm nodule on my thyroid, a 5mm duct enlargement at the head of the pancreas, and coronary artery calcification.

    This last little tidbit is particularly concerning. In fact, I had an angiogram three years ago--pre-lymphoma--that showed zero plaque in my coronary arteries, so I'm curious how I got from no plaque present to calcification (which develops over time, I believe). I've been referred to a cardiologist for more study, but in the meantime I've been hiking, mountain biking, and running hills with no noticeable cardiac deficit. Strange.

    Rituxan maintenance again today with mild reaction. They had to slow down the drip and my 602mL dose took 4.5 hours to administer. Benadryl given--I really hate that stuff.

    Anyway, the glass is way more than half full! My extra-copy MYC concerns have been calmed and the journey continues.
    Age 55 at Diagnosis
    6/2017 - Fell off a ladder. Incidental finding
    7/2017 -CT shows "Innumerable" enlarged nodes up to 2.6cm 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.
    7/2019 - CT shows NED. Coronary calcification is gone.

  3. #73
    Regular User
    Join Date
    Oct 2017
    Posts
    29
    Ha! I LOVE Benadryl. Getting an IV load of Benadryl was absolutely the only good part of chemo! A lovely rush for 2 or 3 minutes, then I fell asleep...

    Anyway. Very glad to hear of your continued all-clear status and that you are doing so much fun stuff!

  4. #74
    Just thought I'd post another update at the 18-month, post-RCHOP milepost. Diagnosed July 2017 with Stage III, grade 3a Follicular Lymphoma with areas highly concerning for DLBCL and two extra copies of MYC.

    My CT scan last week showed no suspicious nodes, all normal size. What's more, the spot coronary calcification that popped up post-chemo/scans/PETs/fluoroscopes is completely gone as well. Rituxan maintenance continues through the end of this calendar year. I had an infusion today, and have another in October and again in December. Next CT scan at 30 months, one year from now.

    Thanks to God, family, and all the support I have found here. The journey continues.
    Age 55 at Diagnosis
    6/2017 - Fell off a ladder. Incidental finding
    7/2017 -CT shows "Innumerable" enlarged nodes up to 2.6cm 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.
    7/2019 - CT shows NED. Coronary calcification is gone.

  5. #75
    Experienced User
    Join Date
    Oct 2013
    Posts
    74
    great news
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  6. #76
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,350
    Great update and long may it continue as for the coronary calcification one has to ask was it really there in the first place on the previous scan.
    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.

  7. #77
    Experienced User
    Join Date
    Nov 2017
    Posts
    78
    Excellent news!!!! Happy for your.
    Enjoy and take care.
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done
    Ago/18: 3x HDMTx completed!
    Dev/18: PET-CT Done. All good
    Apr/19: Follow up. All good.
    Oct/19: Follow up. All good.
    ... on to follopw ups...

 

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