Likely.....

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Comments

  • PBL
    PBL Member Posts: 366 Member
    edited November 2022 #62

    Max,

    Sorry I haven't been around of late - I am currently struggling with my own issues...

    I am very happy for you that you've responded so well to four weekly Ritux.

    The Deauville 5-point scale (named after a posh sea resort town in Normandy, France) reflects the evolution of your SUVs as compared to their initial values, with cut-off points at the individual patient's values for mediastinal blood pool (*2*) and liver (*3*).

    Any score from 1 to 3 is considered good. FWIW, I got a "3" after 6 R-CHOP, and never got lower than that.

    Now, to address the fatigue issue. Please keep us posted on what your hematologist says about it.

    PBL

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member

    I met the doc today. She summarized that my PET was as good as possible....

    Briefly: Two years' of Rituxan Maintenance, once every three months, which is what one would expect.

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member

    Thanks for the update. Trusting all goes well. Hope your holidays are blessed.

    Sandy Ray

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member


  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    edited November 2022 #66

    May you and yours have a most wonderful Thanksgiving also, Sandy.

    My liver enzyme ALT has spiked. I read at Rituxan.com that this occurs in 13% of most users. Also, I got Tylenol from the infusion center just prior to each infusion. During my R-ABVD year (2009-10), my onc prescribed me with some Tylenol and opioid-based pain reliever for my Flu-like Syndrome. AST and bilirubin are currently both normal.

    I looked through my 2009-2010 blood panels, and the ALT then was quite high the whole time. Has anyone else had significant experience with this occurring ?

    max

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member

    Max,

    Thanks for the information. I went back to my blood work from 2017 and 2020. Those were the years and times I had Rituxan infusions. On all lab liver enzymes were ALT were in the normal range. Therefore I am probably not much help there. I did have an allergic reaction the first dose but was put under control with Benadryl.

    Have a wonderful Thanksgiving and keep us posted.

    Sandy

  • PBL
    PBL Member Posts: 366 Member

    Hi Max,

    I also had one such occurrence, when my ALT suddenly jumped to five times the upper limit of normal. That was in October 2016, about four months after my last R-CHOP, as I had just started the Ritux maintenance. The bloodwork just prior to that showed ALT at about double the upper limit of normal (so was AST, by the way). Bilirubin always remained normal.

    As it turns out, I had also had the first of my (now identified as) periodic pain episodes, for which my GP had prescribed a ten-day course of oral anti-inflammatory. It was not my first round of that particular drug, and I had always had a hard time with it - but that was the first time bloodwork was done right after - so, a chance finding, I guess.

    Repeat bloodwork every two weeks over the course of the following couple months showed all values gradually getting back to normal, and that was the end of it. I have never again taken anti-inflammatory drugs, and now deal with those pain episodes with TENS, hot water bottles and opioid pain killers or morphine, as needed.

    As a conclusion, I would say that in my case Ritux was not the culprit as I was on maintenance until end April 2018 with no other such incident.

    I hope this helps.

    PBL

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member

    Had my first-ever 'Maintenance' Rituxan infusion yesterday. No reactions, no side-effects. As I wrote before, one every three months, for two years. Changes will be made only if necessary.

    Labs before the infusion show the ALT still climbing -- no known reason. I'm to see a liver dude first opportunity. It may be from the highest-dose-permitted cholesterol drug that I have been on for years. I'll share what liver dude thinks.


    max

  • illead
    illead Member Posts: 884 Member

    Hi Max,

    It’s good to hear things are going as expected. Hope to hear good things about your liver tests.

    Becky

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member

    Max,

    Seems like other than ALT things are going as expected. Hope to continue hearing good results.

    Sandy