Discontinued maintenance therapy today

Marigold2015
Marigold2015 Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I have FL transformed to large diffuse b-cell lymphoma (stage 1; please note a 19cm tumor around my kidney cutting off function). I completed 6 rounds of R-CHOP, 6/16 through 9/16, followed by 1 year of maintenance rituxan. I have had continued low immunity despite otherwise good quality of life. Last month, I suddenly became Neutropenic (likely side effect of rituxan) and was hospitalized with pneumonia and an esophageal abscess.

This prompted me to see a naturopathic oncologist here in Portland and have not been sick since the introduction of a few supplements(namely high-dose melatonin, a 6 mushroom complex, boswellia/ curcumin/quercertin). I decided to discontinue the remaining year of my recommended rituxan treatment today ; according to my oncologist, the remaining rituxan drips would only prolong a remission by about 6 months or so.

 

I'm thinking that I'm risking death from pneumonia,etc. By risking neutropenia from the rituxan. THOUGHTS?

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited December 2017 #2
    Common

    In my non-medically trained opinion, the only risk you've taken is listening to anyone with the terms naturopatic or holistic in their "titles."  These people are never FDA tested or certified, and their products are not either.  Almost never do they have any formal medical school training (rarely, one will have some, or even a degree).  They are the snakeoil peddlers of the modern era.  Cannabis Oil is the "natural" rage in the prostate cancer world. I followed a link a guy had sent in one day to one of the world's largest "therapeudic cannabis" providers.  The founder and CEO had a degree in art appreciation, NONE of the Board of Directors appeared to have any form of scientific training. And, the website itself admitted that NONE of their claims had been FDA reviewed.  Sad, very sad.

    Because prostate cancer (my other cancer), once it is metastatic, is never curable, men in desperation fairly often "go naturopathic."    Every study ever done (regarding PCa) says it hastens death, never delays it.

    A huge percentage of the writers here have been on Rituxan Maintenance for years, some for nearly a decade.  Problems reported by them here are extremely rare.  But it is true that Rituxan can be stopped periodically with little or no harm, such as you are doing. 

    I wish you wellness,

    max

    The following article from the New England Journal of Medicine concludes that neutropenia following Rituxan use is extremely rare, and that causality cannot be with certitude linked to Rituxan itself.  I have not been able to get links to work here at the Boards for some time. You may have to type this address in manually.....

    The summation of the article contains the following sentence: "The complex nature of these cases suggests that the etiology [cause] of the reversable neutropenia is multifactoral."  (emphasis added by me)

    www.nejm.org/doi/full/10.1056/NEJM200306263482620#t=article

  • Marigold2015
    Marigold2015 Member Posts: 4
    #3
    Interesting perspective. Just

    Interesting perspective. Just to be clear, the naturopath did not persuade me to make any decision regarding the use of rituxan. In fact, he has worked extensively with oncologists at cancer treatment centers of America and knows the ins/out of chemo and how the supplements interact with the drugs. For example, mushroom therapies improve killer cell function and support the rituxan. What can it hurt? I understand there are a lot of quacks it there and am blessed to have resources to separate them out. Thank you for your input.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #4
    Just curious

    What, specifically, convinced you that Rituxan caused your neutropenia? Is it just a guess Or is it based on something of substance? Personally I think you are making a big mistake but that is just my opinion. Incidentally you can get most all of what you mentioned by simply eating curry with mushrooms. Hope it works for you because the results, if you are wrong, could prove to be fatal. Best of luck. Hope you don’t meet a Kangen water huckster or you will be out $4200 for another worthless device. These people prey on the sick and scared in society. I truly do wish you the very best.

  • Evarista
    Evarista Member Posts: 336 Member
    #5
    Neutropenia can be random...

    Just want to reinforce what Shady & Max have said.  Rituxan related late-onset neutropenia (LON) is a documented phenomenon with folks who have had rituxan, both in the limited timeframe of R-EPOCH or R-CHOP and with rituxan maintenance.  The literature is still somewhat limited and tends to center on those getting rituxan maintenance for autoimmune conditions.  But there is also recent medical & scientific literature on us lymphoma folks.  The neutropenia is generally short-lived and pretty much goes unrecognized unless a patient happens to have bloodwork at the time (my case) or presents with an infection (your case).  I had my last rituxan in late May and experienced an episode of LON in early September.  Recovered to normal numbers and no further issues. So, decision is yours, of course, but consider the possibility that you may never have another episode of neutropenia even if you stay on the rituxan.

  • OO7
    OO7 Member Posts: 281
    edited December 2017 #6
    Curve ball folks

    My ONC stopped my Rituximab.  I was treating my follicular stage 4 grade 2 with the single agent Rituximab.  My white cell counts were .6 when we stopped.  Over the course of treatment it declined.  My local doctor and Dana Farber doctor decided it not give me any more.  Also stopped antivirals.

    I was neutropenic for well over three years.  I am now just up to a 3 at three years out.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #7
    OO7 said:

    Curve ball folks

    My ONC stopped my Rituximab.  I was treating my follicular stage 4 grade 2 with the single agent Rituximab.  My white cell counts were .6 when we stopped.  Over the course of treatment it declined.  My local doctor and Dana Farber doctor decided it not give me any more.  Also stopped antivirals.

    I was neutropenic for well over three years.  I am now just up to a 3 at three years out.

    We are all different

    i too had single agent Rituxan for primary therapy ( FNHL stage 4 )and received 26 infusions. One a week for 8 weeks followed by maintenance. I had a reaction the first time and suffered joint pain and some other side effects but never neutropenia. Actually one thing you have to consider is dosage. I had a fairly large dose at 785 per infusion. Some people do get neutropenia but it is the exception, not the rule. In fact my onc seldom sees it in patients receiving single agent Rituxan. Bottom line is whatever works. If spices and mushrooms worked for me I would not hesitate to use them. 

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited December 2017 #8
    OO7 said:

    Curve ball folks

    My ONC stopped my Rituximab.  I was treating my follicular stage 4 grade 2 with the single agent Rituximab.  My white cell counts were .6 when we stopped.  Over the course of treatment it declined.  My local doctor and Dana Farber doctor decided it not give me any more.  Also stopped antivirals.

    I was neutropenic for well over three years.  I am now just up to a 3 at three years out.

    Just wondering

    A 3 for WBC or neutrophils? My neutrophils are 2.8 and WBC 3.9 also 3 years after R therapy. My lab says normal range for neutrophils is above 1.9

  • OO7
    OO7 Member Posts: 281
    #9
    ShadyGuy said:

    Just wondering

    A 3 for WBC or neutrophils? My neutrophils are 2.8 and WBC 3.9 also 3 years after R therapy. My lab says normal range for neutrophils is above 1.9

    I don't recall the number

    I was both neutropenic and leukopenic.  Sorry I don't recall the values right now but can tell you they were always low and at times they were concerning.  Here is another odd fact, I never got sick even when my house was a sick dirty mess of a Petri dish. I lugged both my husband and son into the hospital three different times.

    Final odd Rituximab quark.  It left me with shortness of breath.  The doctors have done there best  to diagnose the shortness of breath but nothing shows up on film, my heart is fine so they want to write it off as stress.   All I can tell you it wasn't there before diagnosis and yes the whole thing was stressful but it will be four years in April and I still have it.  I'm anything but stressed.   I have even gone as far as to work with a counselor for over a year and it never went away.  

    My point is, we are all different..   I'm Rudolph, the oddball with the shortness of breath that was never there before but is now. It may not have changed  anyone else but it did change me. Don't get me wrong, I'm not complaining it is what it is.  Oh and of course it lowered my counts but the doctors knew that.....

    I'll blame the Rituximab and my DNA?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #10
    OO7 said:

    I don't recall the number

    I was both neutropenic and leukopenic.  Sorry I don't recall the values right now but can tell you they were always low and at times they were concerning.  Here is another odd fact, I never got sick even when my house was a sick dirty mess of a Petri dish. I lugged both my husband and son into the hospital three different times.

    Final odd Rituximab quark.  It left me with shortness of breath.  The doctors have done there best  to diagnose the shortness of breath but nothing shows up on film, my heart is fine so they want to write it off as stress.   All I can tell you it wasn't there before diagnosis and yes the whole thing was stressful but it will be four years in April and I still have it.  I'm anything but stressed.   I have even gone as far as to work with a counselor for over a year and it never went away.  

    My point is, we are all different..   I'm Rudolph, the oddball with the shortness of breath that was never there before but is now. It may not have changed  anyone else but it did change me. Don't get me wrong, I'm not complaining it is what it is.  Oh and of course it lowered my counts but the doctors knew that.....

    I'll blame the Rituximab and my DNA?

    Rudolph

    007,

    You were Rudolph, the oddball.

    I had a lime green nose, and no one would even write a Christmas story about me !  (Who ever heard of Max, the lime-green nosed Reindeer ?)

    I too had long term, severe breating problems, never really properly diagnosed. My onc kept checking and said Bleomycin was NOT the issue, despite the development of fibrosis.

    I'm just glad we are all still here today, to share what we know.  Many things medical science still cannot figure out.  I'd bet the petri dish has turned into an elegant Roman bath, and hope so,

    max

  • Evarista
    Evarista Member Posts: 336 Member
    #11
    I am not a reindeer

    Just so we can emphasize how different we can be when responding to chemo:  I started with very severe respiratory difficulty.  In fact, it was so bad, I had been ignoring the symptoms that were red flags for my bigger problem (lymphoma).  Once I started my chemo, my respiratory troubles disappeared very quickly.  We assume it was the prednisone...But who really knows?

  • OO7
    OO7 Member Posts: 281
    #12
    Max Former Hodgkins Stage 3 said:

    Rudolph

    007,

    You were Rudolph, the oddball.

    I had a lime green nose, and no one would even write a Christmas story about me !  (Who ever heard of Max, the lime-green nosed Reindeer ?)

    I too had long term, severe breating problems, never really properly diagnosed. My onc kept checking and said Bleomycin was NOT the issue, despite the development of fibrosis.

    I'm just glad we are all still here today, to share what we know.  Many things medical science still cannot figure out.  I'd bet the petri dish has turned into an elegant Roman bath, and hope so,

    max

    We need to work on that story!

    I needed that humor today, thank you!

  • OO7
    OO7 Member Posts: 281
    #13
    This is what I mean....

    if we all fit into a mold, the cure would have been found long ago.....

  • lindary
    lindary Member Posts: 711 Member
    #14
    Rituxan maintenance & white cell counts

    I just finished 2 years of Rituxan maintenance. Dring that time my white cell count would go down by about .5 and sometimes it would go up. Other counts whent up & down during the same time.  I just told myself to not worry. I went though most of my life not knowing what my blood counts were and I did just fine. Now I have my bood checked every 2 to 3 months. Wonder what it would have been like if I had my blood checked like this my whole life?  

  • Marigold2015
    Marigold2015 Member Posts: 4
    #15
    Rare doesn't mean it doesn't happen

    Thanks for the input y'all. I'm getting a pet scan on the 26th and will make my final decision about rituxan then. I'm getting awfully excited about the car-t cell therapy that's coming down the pipe! I haven't been sick since hospitalization in early October even with sick babies. I'll thank the vitamins and exercise for that. 

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