Rituximab-related late-onset neutropenia (R-LON)?

Evarista
Evarista Member Posts: 336 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I cannot find this condition discussed here and wonder what others may have experienced with regard to "late-onset neutropenia", i.e., neutropenia that appears weeks or months after completetion of chemo that included Rituxan (R-LON).  I do not know that this is what is currently going on with me, but it seems a more desirable explanation than the possibility of relapse, especially so soon.  It's a holiday weekend and doc won't be available for conversation and/or further testing until sometime next week.  So I just thought I'd ask what you good folks might know about this. 

My situation:  68 yo F with DLBCL diagnosed Jan. 2017; double-expressor, but no "hits". Presented in bone-marrow failure with BM HLH. Periaortic and adnexal LN involvement. 6 rounds of DA-R-EPOCH completed at the end of May.  CT scan after Round 2 very good and after Round 4, no sign of disease. PET scan 6 weeks post-chemo completely clear and labs trending upwards. 10-weeks post-chemo labs OK, but 14-weeks post-chemo labs show that my ANC has dropped to 720 and platelets are only up to 129.  In contrast, my Hb is good at 14, so I do not seem to be in complete BM failure again. At least not yet.

After going into a complete tailspin about relapsing, I did some reading & came across R-LON in association with DLBCL. The reported incidence seems to vary (~9% - 23%), largely because most studies are retrospective. Identifying patients with this "syndrome" seems dependent on their having presented to clinic with an infection. The few propective studies seem to suggest that R-LON patients that do not get infections recover without impact to relapse or survival and that the neutropenia is transient.

Next PET not scheduled for another 4 weeks, but note from clinic implied another BM biopsy may be warranted.  Don't want to self-diagnose or panic too much, but interested in hearing from anyone with experience with this.  Thanks.

Comments

  • dana-mihaela
    dana-mihaela Member Posts: 39
    #2
    Hi Evarista,

    I would just comment on my WBC counts and I can tell you that after one year after my last chemo ( I had R-CHOP) I still have lower than normal values. Last test results showed a little increase. I think it all depends on the body healing and recovering. Do not worry before you need to.

    Dana

  • Evarista
    Evarista Member Posts: 336 Member
    #3
    dana-mihaela said:

    Hi Evarista,

    I would just comment on my WBC counts and I can tell you that after one year after my last chemo ( I had R-CHOP) I still have lower than normal values. Last test results showed a little increase. I think it all depends on the body healing and recovering. Do not worry before you need to.

    Dana

    Hi Dana...

    And thanks for your supportive remarks.  I certainly understand & expected lower than normal.  What I didn't expect was having my numbers fall by more than half over a 4 week interval.  Some clinics would have put me back on Levoquin already with an ANC of 720; my clinic doesn't do that unless we fall below 500, so not there yet.  We've re-instituted our household neutropenia precautions, but such a pain!  Just have to wait until next week to see what dr says.

  • Sandy Ray
    Sandy Ray Member Posts: 143 Member
    #4
    Prayers

    I am headed for first PET scan since treatment ended July  3 , 2017. I will be praying yours is not a relapse. I am anxious to hear what you find out. I have not been to a Dr in almost 6 weeks and I hope after I get the results next week it is even longer. The last 2-3 weeks I have started finally feeling like I am not 100 years old. Please let us know what you find out . I love this site and the chance to talk to others who are going down very similar roads. I do not think people who have not been there can fully understand. I am sure I never did before I actually lived it.

    Prayers being sent.

    Sandy (53 year old male) 

  • ShadyGuy
    ShadyGuy Member Posts: 902 Member
    #5
    Normal range WBC

    My WBC hovers around 3.6  - 3.8. What do you guys consider low? I had always thought anything under 4.0 was low but my doc says no worries. Just wondering what you have been told.

  • Evarista
    Evarista Member Posts: 336 Member
    edited September 2017 #6
    ShadyGuy said:

    Normal range WBC

    My WBC hovers around 3.6  - 3.8. What do you guys consider low? I had always thought anything under 4.0 was low but my doc says no worries. Just wondering what you have been told.

    "Normal" WBC

    Hi Shady.  It's important to remember that standard ranges may vary from lab to lab.  So, "normal" for you may be slightly different than "normal" for me.  My clinic's standard range is 4.00 - 11.00 X10(9)/L, so "4" would be the lower end of "normal". But my pathologist friend tells me that the Absolute Neutrophil Count (ANC) is more meaningful. 1.50 - 7.40 X 10(9)/L here. That said, my 14 week WBC is at 2.8, down from 3.5 a month ago. Consistent with the dropping ANC..

  • Evarista
    Evarista Member Posts: 336 Member
    edited September 2017 #7
    Sandy Ray said:

    Prayers

    I am headed for first PET scan since treatment ended July  3 , 2017. I will be praying yours is not a relapse. I am anxious to hear what you find out. I have not been to a Dr in almost 6 weeks and I hope after I get the results next week it is even longer. The last 2-3 weeks I have started finally feeling like I am not 100 years old. Please let us know what you find out . I love this site and the chance to talk to others who are going down very similar roads. I do not think people who have not been there can fully understand. I am sure I never did before I actually lived it.

    Prayers being sent.

    Sandy (53 year old male) 

    Thinking about you

    H Sandy, good to see you.  Actually been thinking about you lately since we are on similar timelines. Also, you've been a bit of my hero because your attitude is so incredibly great. I remember that first 6 weeks is a long time to wait for the PET scan.  Hopefully it will go wonderfully.  I, too, am finally starting to feel human again; a little behind you but significantly older, so not surprising. Walking 1+ miles twice a day, I can feel my fingers(!), and the toes are improving too. I so hate to think about any steps backwards at this point. But I'm staying positive and I will report back when I learn more, whichever way it goes.  Good luck this week.

  • dana-mihaela
    dana-mihaela Member Posts: 39
    #8
    No worry you guys

    You just finished chemo it is normal to have such low values. After I finished chemo my ANC also was 2.8 Evarista. Now I am one year after chemo and the value is 5.6. It took one year for the body to produce white blood cell normally. I also help with supplements , I am taking Essiac Tea, Beta Glucan and Turmeric Curcumin tablets. You can google all this or I can give you more info if you are intrested in alternatives. Just let me know.

    Dana

  • Evarista
    Evarista Member Posts: 336 Member
    edited September 2017 #9
    Update on late-onset neutropenia

    Well, apparently this is a "thing".  Very common with maintenance rituxan but not terribly unusual with folks like me who've only had 6 doses.  While still below normal, my labs have crept upwards.  Saw my doc today (hem-onc specialist), and she said "no worries".  Flow cytometry analyis of blood showed no sign of tumor cells and my PET scan today was all clear. So, onward with the continuing work of getting stronger...Be well, all.

  • Sandy Ray
    Sandy Ray Member Posts: 143 Member
    #10
    Evarista keep it going

    Evarista,

    Glad to see your upbeat and hoping to see more post of you continuing to improve.

    Sandy Ray

  • Rexmax
    Rexmax Member Posts: 55 Member
    #11
    Evarista happy to hear

    Happy to hear your great news! Hoping for the same great news when I see my Onc on Oct 12th, right now waiting on appointment for Pet Scan. Keep going forward!

Discussion Boards