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Thread: Follicular Lymphoma for a while now

  1. #2271
    Senior User
    Join Date
    Apr 2012
    Kermica! Hello. Catching up on your incredible story. Sending my love and support to you. I dont visit often. Usually come when i am seeking answers and inspiration for myself or others who are battling. I am never disappointed. I always, anazingly, find hope. So happy to hear your treatments are manageable and going well. One step at a time. Love- Mary

  2. #2272
    Senior User
    Join Date
    Jan 2013
    Glad to hear it is doable. Keeping you in my prayers.
    DX12/31/12 indolent b cell fNHL S4 G1/2
    Trial of Ofatumumab(Arzerra) Feb 2013
    4 consecutive weeks -then break for 8 weeks x 4
    8/30/2013 Onc said remission...
    CT scan Nodes stable 04-15 and 7-15

  3. #2273
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Hi everyone. Sorry I am not posting more often but have been consumed with other aspects of things recently. For example, my lymphoma is directly related to my time in service at Camp LeJeune, NC almost 50 years ago. There were numerous VOCs polluting the drinking supply. The government has declared me 100% disabled as a result of that exposure.A friend who is a local anchor on one of our TV stations put together a piece on my story and it aired last week. So far, there have been about 200 FB shares and almost 50,000 views of the story so I have been busy with that. Here is the link to the Camp LeJeune facts. If you would like to get a link to the story, let me know and I well forward the link to you. https://www.publichealth.va.gov/docs..._brochure.pdf#

    Weight loss is up to 12 pounds as of this morning. There is not a lot of information out there other than this is a negative predictor for both treatment outcome and OS...oh, joy. defens, I do get more exercise than the average person of my age, I suspect. Walking, hauling things in from the driveway, working in the yard, trimming trees, decorating outdoors for the holidays, etc... I've never been much of a gym rat but have always been very active physically.

    Next infusion is Tuesday morning. I am a bit nervous since I am reading that weight loss can be a reason for reducing or stopping treatment. I want them to go full bore, if I am in this I am in this all the way. Of course, if "full bore" means even more negative impacts than I am not sure what path will be offered or taken. My lymphoma has always been somewhat resistive to treatment and recurrence has always happened in a relatively short time compared to others. Tuesday will be interesting if nothing else. I am hoping they do not come up with a reason to modify or halt the protocol. I will let you know how that goes.

    Good health,

    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.

  4. #2274
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    K my dear friend,
    Their are those that winge and moan constantly never able to mentally accept or indeed cope with their condition who are living with permanent tension and anxiety.

    Yourself being the polar opposite to those mentioned above.

    Their lays the difference as to how objectively we all should view both the disease and treatment.
    Given your journey so far over many years, the multiplicity of treatments involved you still remain positive.

    I am certain however difficult the treatment regime becomes, you will face it with the determination, tenacity and stoicity as you have in the past.
    My thoughts are with you and the family.
    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.
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  5. #2275
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013

    I couldn't have written my thoughts better than those reiterated by Baz. Without hesitation, i feel the same and will continue to keep you both in my thoughts and close to heart.


  6. #2276
    Moderator Top User
    Join Date
    Mar 2010
    K, I recall several people having rchop at thee same time as me also experienced weight loss and were seen by a dietician to try to help them, some of the loss was down to not eating properly due to the metallic taste and others just struggled during treatment, how is your appetite ?
    I know when I had treatment I did not eat as much as I used to but made myself eat as I knew I had too, I eventually put some weight back on by around the 6th cycle, downside was they upped the dosage of the drugs including R which was a pain as I always had it infused slowly due to reactions.
    May be worth discussing a mid point scan if its not been agreed already (sorry cannot remember if you said earlier if it was part of the protocol as it used to be )

    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. #2277
    Senior User
    Join Date
    Mar 2017

    If indeed weight loss were a negative predictor, then I would suspect it should be major, extreme weight loss. I had lost 8 kg (or about 17 lbs) before R-CHOP even started, and lost another 8 kg in the course of treatment. Never heard a word of concern from my hematologist, and had all six infusions as planned.
    Just to give you some perspective, I currently weigh 58 kg (128 lbs) after putting 7 kg back on.

    Please keep faith that your mid-treatment scans will yield encouraging results!


    Last edited by PBL; 12-09-2018 at 12:57 PM. Reason: addendum

  8. #2278
    Experienced User
    Join Date
    Sep 2017
    Some shots in the dark here re your weight loss.

    "Glycerna" chocolate breakfast drink and lots of Cheerios--with blueberries. Got me through RCHOP. Strange, I didn't get the metallic taste everyone describes with food--only with plain water. And I drank about 3-4 liters a day. When I didn't feel like eating, my wife nagged. I don't do well with nagging--so I ate.

    How are your blood glucose levels with all that Prednisone? Mine jumped into the 200s and my doctor put me on Metformin 500mg during treatment. Has advised me to remain on it even now.

    My weight held at 170lbs throughout my treatment--but dropped 10 pounds when it was done. I think everyone is just a little different. Your 12 pounds sounds within the range of reason.
    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.

  9. #2279
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Thanks everyone for your kind words and encouragement. I remain positive about things but, as usual, attempt to analyze what impacts I am absorbing and whether they are significant or not. I am keeping an eye on the weight as I have not experienced anything similar through all the other treatments I have had over the years. My biggest concern is that this treatment, like the others before it, will yield less than optimal results. For example, when I did R-CVP, we had a positive result but it was very short lived. With Aliqopa, it was killing old tumors but new ones were popping up at the same time. So now, we are on to R-CHOP but with transformation. I remain confident of having a future but do get tired of not being able to get the best result which is, at this point what I have to have in order to get to a transplant. Time will tell and I will stay the course, no matter what comes. I am hydrating heavily and trying to be sure to eat as much as I can. My glucose level remains within normal limits and I also drink a couple of Ensure High Protein every day.

    The weight loss is something I am monitoring, just as I check my temp every day. It's just how I do things. As far as a mid scan, that will occur. I think we are going to do that after Cycle 4 as we are planning up to 8 cycles in total. As of now, it will show reduced tumor burden but not elimination of tumors, if I had to make a bet.

    I am not negative but am very aware that no treatment to date has delivered the result I need, at least not since the original B+R put me into remission for a bit less than two years. Think about it - resistive, recurrent and transformed is not a good combination. That oesn't mean I am done, just that I recognize that the situation is somewhat dire and past history is not exactly additive to confidence about how this will end up. Fortunately, if we don't get where we need to go, CAR-T remains in the wings to step up for the next fight.

    Thanks again to all for the encouragement, it means a lot.

    Good health,


  10. #2280
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Oh, if we could but accurately predict the future! Four years ago, beginning at stage IV, I had four PET/CTs in succession,at the supposed mid-point of four different regimens, each of which was rather ominously summarized as: "disease progression." The subsequent four years have demonstrated once again that, in Yogi Berra's famously mangled words, "It ain't over until it's over."

    Was something on the order of TREC (B+R+Etoposide+Carboplatin) ever considered? Aside from co-morbidities and IPI factors, have any of your 'new' tumors encountered those four drugs? And, if I again remember correctly, TREC was rather effective against relapsed refractory follicular as well as DLBCL. I note once again here that, minus the "R", it was fabulously successful against two sub-types of aggressive, multiple-relapsed, refractory and heavily pre-treated T-Cell Lymphomas.

    As well, ASH was just this last Tuesday. There was considerable news, particularly regarding pathway inhibitors such as Opdivo and Keytruda.


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