Mid-Maintenance Rituxan Reactions

tgyphilly
tgyphilly Member Posts: 49 Member
edited January 2020 in Lymphoma (Hodgkin and Non-Hodgkin) #1

I am being treated with Rituxan-only for relapsed NLPHL, currently one year into maintenance stage after initial weekly infusions (4x).  After no reactions at all to Rituxan, I appear to be having reaction issues for the first time, with itching/prickly feeling in random places and general feeling of sickness.  PET/CT was ordered ahead of schedule b/c of my symptoms and it showed moderate increase FDG activity in two nodes (4.6 SUV).  Doc said he is not worried as SUV is not high enough to indicate serious metabolic activity.  However, the symptoms continue and doc does not necessarily think they are Rituxan related, although he's not ruling it out. 

 I have had many tests to rule out infections, antibody reactions, viruses, etc. and nothing shows up.  Have been on Predisone twice and now on Gabapentin.  Neither had any effect on symptoms.

Has anyone had similar late reactions to Rituxan?   Thanks

 

Comments

  • po18guy
    po18guy Member Posts: 1,465 Member
    #2
    The important thing is...

    ...that it does not seem to be lymphoma related. Have your blood eosinophil levels been checked? An elevated level of eosinophils is associated with immune response, normally allergic reaction. Anything is possible, since each body's immune system is absolutely unique and we do not react to any given substance until we do. There seems to be an unknown and unpredictable level or degree of exposure to certain substances that are the straw that breaks the camel's back, triggering immune response.

    As well, lymphoma is tumors of the immune system, and treatment also damages, suppresses or stimulates the immune system. All manner of strange reactions might occur, and seemingly at random times. Have you gone to the Rituxan websites and examined the potential reaction? What you are experincing may be listed under "rare side effects."   

  • tgyphilly
    tgyphilly Member Posts: 49 Member
    #3
    po18guy said:

    The important thing is...

    ...that it does not seem to be lymphoma related. Have your blood eosinophil levels been checked? An elevated level of eosinophils is associated with immune response, normally allergic reaction. Anything is possible, since each body's immune system is absolutely unique and we do not react to any given substance until we do. There seems to be an unknown and unpredictable level or degree of exposure to certain substances that are the straw that breaks the camel's back, triggering immune response.

    As well, lymphoma is tumors of the immune system, and treatment also damages, suppresses or stimulates the immune system. All manner of strange reactions might occur, and seemingly at random times. Have you gone to the Rituxan websites and examined the potential reaction? What you are experincing may be listed under "rare side effects."   

    Thanks Po

    Thanks.  Yes, eosinophils are normal and checked each visit to the oncologist.  I have scoured the web about Rituxan side effects, and there seems to be some overlap with my symptoms, but mainly it is in the form of immediate infusion reactions.  I am having no infusion reactions... I was treated w/Rituxan again last month even after these symptoms cropped up in August.  

    I think you are probably right with this being a tipping point immune response that Rituxan triggered, albeit in a delayed fashion.  The problem is that I am scheduled for 21 more months of Rituxan... not looking forward to feeling this way for that long (however, as an ABVD veteran, I am fully aware of the lousy alternatives).  If my pending scan results are clear/generally OK again, I may push for surveillance so as to get off the Rituxan.  

  • po18guy
    po18guy Member Posts: 1,465 Member
    edited January 2020 #4
    Sorry if I sounded like a know-it-all...

    ...but I am used to writing for lurkers. IIRC, NLPHL is on the verge of being re-classified. As such, there may be some more latitiude in treatment. There is an alternative to Rituxan - Arzerra/Ofatumumab - but it is not currently labeled for lymphoma, so would have to be used off-label. As well, after only two infusions, I am still B-lymphocyte depleted at the three year mark. So, Benadryl as a traveling companion may be in order?   

  • tgyphilly
    tgyphilly Member Posts: 49 Member
    #5

    I hadn't heard that -- would it be classified as a Non-Hodgkin's type?   I have tried Benadryl off and on, but it doesn't seem to move the needle all that much on symptoms.  Maybe I need to take it for a prolonged period of time (more than a month) to start to feel the benefits.  Or so I recently heard.  

    You had two Rituxan infusions three years ago and are still B-lymphocyte depleted?  Did doc say that the Rituxan is still in your system and killing off your B cells, or your immune system production was changed long-term because of the treatment?   I have had 8 infusions and counting.  :-) 

    Thanks for info on Arzerra/Ofatumunab, I will look into it.  

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #6
    tgyphilly said:

    I hadn't heard that -- would it be classified as a Non-Hodgkin's type?   I have tried Benadryl off and on, but it doesn't seem to move the needle all that much on symptoms.  Maybe I need to take it for a prolonged period of time (more than a month) to start to feel the benefits.  Or so I recently heard.  

    You had two Rituxan infusions three years ago and are still B-lymphocyte depleted?  Did doc say that the Rituxan is still in your system and killing off your B cells, or your immune system production was changed long-term because of the treatment?   I have had 8 infusions and counting.  :-) 

    Thanks for info on Arzerra/Ofatumunab, I will look into it.  

    Orphaned disease.....

    Tgy,

    NLPHL has been classified as an NHL in the past by various European countries, and may still be so today.  It is unlike HLs in that it does not present the HL-defining Reed-Sternberg cells, but DOES present the CD-20 cell -- the  only type of HL to do so.  And Rituxan kills only -- you guessed it -- the CD-20 cell, which is why NLPHL is the only form of HL that receives Rituxan in treatments.

    NLPHL is indeed a sort of HL "Follicular," since it is verify indolent.   Since NPLHL has been treated alternatively for two decades with either R-ABVD or R-CHOP, reclassifing it won't likely change drug choices, at least initially.  Perhaps it will motivate some research, since the disease is very little studied.

    I responded to your question on the earlier thread regarding Rituxan, in case you have not yet seen it.

    max

     

    .

  • po18guy
    po18guy Member Posts: 1,465 Member
    #7
    What to call these diseases...

    The problem is with medical terminology. Dr. Dennis Hodgkins first described the disease, before  the "non" types were discovered. But then, since those late-comers were different, and since Hodgki's Disease was already taken, what to call them? So, this nebulous term "non-Hodgkin's" was arrived at. It does not tell you what they are, but rather what they are not. In a similar vein, such widely varied condistions as Sarcoidosis and ALS are negative diagnoses: they are called what they are since they are not anything else. A backward system, but as the twig is bent, so grows the tree.

    B-Cell Lymphomas all (with probably some rare exception) express CD20, which is a great target. But, somewhere early along the line, NLPHL was tossed into the Hodgkin's category, even tthough by strict definition it did not fit. The problem now is what the W.H.O. eventually chooses to do with this growing mess. And, we are not even talking T-Cell Lymphomas, which seem each to be an individual disease, so incredibly varied they are. And, let us not forget the N/K ("Natural Killer") cell lymphomas, which even though related to T-Cell Lymphomas, are actually none of the above.

    To my way of thinking, "Lymphoma" and "Hodglkin's Lymphoma" would make sense, but would carry the potential to create even further confusion. So medical terminology lumbers along, mired down in history and tradition.

  • tgyphilly
    tgyphilly Member Posts: 49 Member
    #8
    All that matters maybe...

    Is how agressive and responsive to treatment the lymphomas are.   If we were to categorize lymphomas on a spectrum of aggressiveness and treatment receptivity perhaps it would be more helpful to both patients and others.  Follicular NHL has a lot more in common with NLPHL when it comes to prognosis and treatment than it does with DLBCL.  Or, with the advent of MAB's and targeted immunotherapy does it make more sense to organize the lymphomas by gene expression (e.g. the "CD20 Lymphomas")?  Or, maybe, who cares?   Laughing

  • po18guy
    po18guy Member Posts: 1,465 Member
    #9
    I am simply thankful that they respond at all

    Correction: Dr. Thomas Hodgkin first identified the disease named for him. Now, some Hodgkin's expresses CD20, which defines a B Lymphocyte. However, some express CD30, which is common in Anaplastic Large Cell Lymphoma, which is a T Cell Lymphoma. And this is where diagnoses can be confused in pathology. This is also why  a second opinion on pathology can be critical. One of the lymphomas I had (Angioimmunoblastic T Cell Lymphoma) produces both abnormal B and T lymphocytes in the tumor, making identification all the more difficult and crucial.  

    However, the clusters of differentiation (CD) expressed on the cell surface are treatment targets and this is more crucial with the emerging targeted therapies than is the arbitrary name assigned to the disease. So, for now, the classifications remain as they are. Transplant, CAR-T and now Bi-Specific Antibodies are increasing hope month by month. This has nothing to do with mid-maintenance reactions, but the reactions themselves indicate an immune system capable of reacting, which is, by itself, a good thing. Controlling the reactionsis sometihng doctor must ponder.  

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #10
    tgyphilly said:

    All that matters maybe...

    Is how agressive and responsive to treatment the lymphomas are.   If we were to categorize lymphomas on a spectrum of aggressiveness and treatment receptivity perhaps it would be more helpful to both patients and others.  Follicular NHL has a lot more in common with NLPHL when it comes to prognosis and treatment than it does with DLBCL.  Or, with the advent of MAB's and targeted immunotherapy does it make more sense to organize the lymphomas by gene expression (e.g. the "CD20 Lymphomas")?  Or, maybe, who cares?   Laughing

    Aggression

    tgy,

    First-line aggression is an important issue, along with others. Perhaps the most important is how/from what the cancer cells initially emerge; this seems the most determinatory fact.  Another issue of interest is that when NLPHL relapses, it is usually NLPHL again, but quite often, it comes back as DLBCL.  In other words, aggressive NHL.  The late Arlen Spector, Senator of Pennsylvania, first had NLPHL.  A few years after, it relapsed as NLPHL.   And after that, it came back as DLBCL, which is what took his life.  NLPHL is also prone to recur as acute leukemia, as are many lymphomas treated with Adriamycin.  This is statistically even more likely if radiation also was employed.

    I think 'everyone cares.' But with thousands of researchers, government officials, insurance companies, and foreign governments involved, universal changes are an exercise in herding feral cats.  But know that even if a classification change comes, it will not have likely, quick changes in clinal treatments or course.  NLPHL has been ad hoc since the beginning; not standardized or well-understood by anyone.   

    It would be like the lyric in the Who's great hit Won't Get Fooled Again:   "Hail to the new boss. Same as the old boss"

     

  • Rexmax
    Rexmax Member Posts: 55 Member
    #11
    Rituxan Related issues

    Rituxan caused a  hypersensitive allergic vasculitis reaction with my Rituxan Maintenance for 2 years following 6 Rounds of Chemo ( Large B cell and Follicular) No issues on Chemo due to the  prednisone  I took with each Chemo session, however with maintenance it was Rituxan only then the  vasculitis  started. Since the  vasculitis didn't cause me any major medical issues just a lot of pink spots on legs the  rheumatologist and my  oncologist both agreed the benefits of Rituxan outweighed the  vasculitis issue . Finished Rituxan Maintenance August 2019 and as of today no more  vasculitis  The point I'm trying to make is Rituxan can cause  allergic reactions of all kinds. My   Oncologist really didn't think the Rituxan was the problem however I know my body is skin  sensitive so I opted to go with my  rheumatologist and continue with the Rituxan Maintenance.... Your on a great site here I don't know where I would be today without all the wonderful  encouraging  Caring people here wishing all a blessed day! Lillian 

  • tgyphilly
    tgyphilly Member Posts: 49 Member
    #12
    Thank you Lillian

    The Lymphoma community on CSN has been helpful in just the week or so I have been on it.  It's great to hear from people who have actually been treated for NLPHL and have dealt with the same issues.   

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