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Thread: Follicular Lymphoma for a while now

  1. #2451
    Super Moderator Top User po18guy's Avatar
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    K, hope that all is going splendidly - well, relatively speaking that is.

    Here is a vid that you and DW might want to listen to as you putter about. What to expect, what not to, changes, adaptations to transplant, etc. I added it to the transplant sticky.

    https://www.bmtinfonet.org/video/cop...ter-transplant

  2. #2452
    Administrator Top User Kermica's Avatar
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    Hey folks, sorry I have been off the board for a while. My recovery had been progressing smoothly and my counts were very good for the first 90 days post transplant. Then, last week, I got hit with a very nasty surprise.

    Has anyone heard of Delayed Onset Neutropenia? Basically it is a condition in which the nutrophil count and, correspondingly, the white blood cell count drop like a rock. My differential ANC (the best indicator of neutrophils in the blood) has dropped to zero and my WBC has dropped to about 2.1, well below the normal threshold of 4.0.

    I am in Boston tomorrow for my Day 100 checkup and have already informed the transplant team of this development. I suspect that they will hit me with a Neupogen or a Neulasta shot to boost counts which will be a step in the right direction. My research indicates that this condition is more prevalent in those who have had Rituxin and I have had a ton.

    I guess I am just venting here. My expectation going forward is that I am going to be in a fight to maintain my immune system functionality. Right now it is near zero. If life will require Neulasta shots every few months, I can only imagine that the insurance folks are not going to be happy. This is frustration, of course because things were going really well until this occurred.

    Oh well, if it is not one thing it is another, right?

    Good health,

    kermica

  3. #2453
    Senior User
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    Hi Kermica,

    Glad to read your - overall - good news. I had read about LON and its link to Rituximab… I guess perfection really doesn't belong in this world!

    I hope this is just a tiny hiccup on an otherwise smooth road to recovery.

    PBL
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  4. #2454
    Super Moderator Top User po18guy's Avatar
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    Hmmmm. Interesting relationship between potential B Cell depletion and blood counts. Certainly our counts will be on a roller coaster for the foreseeable future. Four years past, mine still fluctuate. Did not have "R", but rather its reputedly stronger cousin, Ofatumumab. I tend to believe that claim, as 2+ years post infusion, I am still B Cell depleted. So, no immunizations for me this year, or perhaps even next year.

    This is a forum, therefore you need something to write about, no?

  5. #2455
    My neuts dropped to virtually zero after my first RCHOP infusion--0.005 or fifty. WBC was 1.0. No telling if this was caused by the R or the CHO, but they ordered me into the office right away, hit me with Neupogen, and put a Neulasta injector on my arm after every session from that day forward. Claratin helps the discomfort. I remain on Rituxan maintenance--minus the Neulasta--and my WBCs remain in the 2.5-2.9 range. Neuts are low normal.

    Apparently, now days it's considered safer to remain home with low white counts than it is to hospitalize in the municipal petri dish.
    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.

  6. #2456
    Administrator Top User Kermica's Avatar
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    Thanks everyone, this place remains a source of comfort in the storm so thanks. I Fell, I had Neulasta after every chemo session I have had so that is about 23 times, I think. It worked great for me. Apparently this crash is an occasional side effect of Bactrim, a anti-biotic and one of the many post transplant meds I was taking. In its place I will start on Mepron, another anti-MERSA biotic which has its own set of challenges. In addition I will start self administration of Neupogen 300 mcg into my belly daily for five days, followed by a blood count.

    As I've said before, every day is a holiday and every meal is a feast! Mask and other preventives continue but I was released from various restrictions yesterday so life is good! Thanks to all for the support.

    Good health,

    kermica

  7. #2457
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    Wonderful to hear! You continue to be an inspiration. Hopefully I will be back on the transplant plan soon. Hope to fare somewhat close to as well as you have. Won't be taking Bactrim as it gives me a full body rash.

  8. #2458
    Sounds like you might be living like a hermit for awhile.

  9. #2459
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Bank Walker View Post
    Sounds like you might be living like a hermit for awhile.
    K and I can correspond. I have 4 years into my hermitage.

  10. #2460
    Administrator Top User Kermica's Avatar
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    Yes I am shopping for mountain top caves now as it appears I will be off grid for a while. Today's interesting development is that my insurance company, for the first time ever, rejected the prescription for Neupogen. They want it to be a bio similar called Zarxio. So, I spent all day yesterday sorting the issue out with them and then communicating with Dana Farber on the required changes. It is not always easy to get to the head of transplant services to revise a script he has already issued, FYI. By the time we had things straightened out, it was 6 pm and they told me the earliest I could expect a delivery would be Thursday or Friday. Meanwhile, the absolute Netrophil count remains at or near zero for going on ten days so the infection mine field is fully populated.

    This morning I called my oncologist to brief them and to see if they want me to come in for a neut booster and a blood count. Yes to the blood count, probably tomorrow. As to the neut booster, it may be complicated since I have this order pending for five doses approved but they will communicate with my doc and let me know what we are going to do...they "share my concern" regarding my current lack of protection but can't make a move unless the insurance folks are on board. Right now, I am pretty happy that one of our better community hospitals is literally down the block from my house.

    Good health,

    kermica

 

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