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Thread: Follicular Lymphoma for a while now

  1. #2261
    Super Moderator Top User po18guy's Avatar
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    If one develops mouth sores (mucositis), there is a triple mixture which pharmacists make up that is colloquially called "magic mouthwash." There is also a prescription-only dexamethasone mouth rinse to reduce inflammation.

  2. #2262
    Hope your day goes well.

  3. #2263
    Administrator Top User Kermica's Avatar
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    Thanks, Bank. POGuy, so far so good on the mouth sores but will keep this for when/if needed so thanks.

    Yesterday was Cycle 2 infusion day. Also saw my PA and had labs. It all couldn't have gone better, from my view. Labs are great so the Nuelasta is doing its job. My PA is very pleased with the tumor reduction and in agreement with the ER doc from last week was caused by the very strong response resulting in high tumor lysis. Somehow, that triggered the pleurisy which was knocked down by the addition of another uric acid reducing med designed to help the kidneys...strange world. The ER doc said the kidneys looked great on CT, lol.

    As far as the infusions, everything went seamlessly. The whole day consumed eight hours but that is fine. I like to go slow on the R given my history with it. Now to stay hydrated, keep side effects in balance and get to day 12 without any escalations. Did I mention that my hair flew the coop right on schedule? It would be difficult for me to care less about that as it shows things are working as planned.. I haven't had this look since I was a Marine recruit. Accepted as a cost of entry then and accepted as a cost of entry now.

    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.

  4. #2264
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    I'm so glad to learn that you're moving forward with this pretty much as hoped. With continued tumor reduction and the side effects well-managed, I'd say your Thanksgiving this year should be celebratory! I hope you have a good appetite and the food doesn't taste too weird!

    Again - happy to hear of your progress!
    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!

  5. #2265
    Administrator Top User Kermica's Avatar
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    Thanks, defens! Thanksgiving was great here, all three kids were in with their significant others and we had a great meal and a great time. I paid for overeating but, thankfully, it was a small price to pay, lol.

    The R-CHOP continues to do its job and my side effects continue to be, in the big picture, relatively minor...just another thing to be thankful for. Along with the continued reduction of tumors of course. I've lost track of another one which had been fairly significant when we started so so far, so good!

    I hope you and yours had as good a day as I did.

    Good health,

    kermica

  6. #2266
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    Happy to hear your treatment is going as well as possible. Slow is good.There is so much to be thankful for, little things really matter.
    Stay positive and strong and take one day at a time. Or an hour at time if needed. Like I need to tell you how to handle life. Just giving you back some of your wisdom.
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  7. #2267
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    It's been a few days since you last checked in. I hope all is going well! And if you just can't stir up the gumption to hang out on the forum, us R-CHOP vets completely understand - go take another nap!
    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!

  8. #2268
    Super Moderator Top User po18guy's Avatar
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    Ditto what Mike said here. No hurry, and chances are I'll be taking a nap at the same time.

  9. #2269
    Administrator Top User Kermica's Avatar
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    Truth is, there is little to report and I just got up from my nap, thank you very much! The pattern is established. I am a little worried about weight loss which has drifted down about 7 pounds since starting (form a 172 baseline), Other than that, Day 2 is easy as the infusion meds wear off, Day 3-9 suck with indigestion and stomach upset (I take Zofran and ducolax twice a day starting on Day 2). Days 10-13 suck with constipation and Day 14-15 I just feel like crap. That said, Day 16-20 are good, I feel fine, have energy (e3xcept for napping) and manage to get some of the stuff done that went by the wayside during Day 2-14.

    Now that I have whined my way through this post, I also have to say that it really isn't that bad. The first two weeks of each cycle impost a price but the third week is like a bonus. My biggest worry at this point is that all palpable sites are still palpable and the largest tumor seems (repeat seems) to have increased in size this cycle, no where near where it was when we started but, none the less, it feels larger.

    Other than that, I am doing great, thanks cor checking in on me.

    Good health,

    kermica

  10. #2270
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    Glad you're still with us to be able to whine!
    With my R-CHOP treatments, I saw significant decrease in tumor size in the first couple of treatments, then it appeared to slow down a bit. There are a few factors in play - first, the Prednisone has an immediate effect in reducing the size of the tumors, but they can rebound a little in size once that wears off, it seems.

    Also, although tumor cells are croaking in droves, their dead carcasses can stay around a long time. I was pretty amazed that even after I'd been declared in remission, it took well over a year, perhaps two, for CT scans to finally show that some of the remaining necrotic tissue was finally reabsorbed. In short, tumor size is one measure of treatment efficacy, but it's not entirely reliable. That tumor that seems to be getting bigger might be due to that Pred rebound, or irritation, or any of a number of other factors. Hopefully nothing to worry about.

    My wife was really concerned that I was going to lose weight during chemo - I'd already lost some due to the lymphoma. She bought me a cool little ice cream maker and a waffle cone press to keep me engaged and fat. Seemed to work well for that purpose...

    As far as the recovery from the treatments - yeah, it sucks. But at least it's predictable and you at least can look forward to it not sucking for a few days. I particularly hated the "post-Prednisone crash" on Day 6.

    Are you getting any exercise to speak of? Unless it's just too cold to venture out, a stroll around the yard or up the street really did me good. My treatments were mostly through summer and fall, so one of my favorite activities was actually burning brush from our property. I could move as fast or slow as I wanted, sit down for a rest and watch the fire, etc. It was sort of gently relaxing and meditative, and really helped my mood.

    Hang in there - you're already on the way to recovery!
    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!

 

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