Feeling badly after Bendamustine/Rituximab first cycle

FormerMember
FormerMember
  • 7 replies
  • 25 subscribers
  • 4172 views

Hi,

I am 58 and was diagnosed recently with NHL - Doctor's think it's either MZL or Waldenstrom's Macroglobulinemia. I have an elevated IGM (around 5g/dl). Bone marrow involvement is 90%. My only symptom was anemia so doctor tried Rituximab only first. After 3 weeks (3 treatments), my IGM continued to climb, so I started Bendamustine/Rituximab. I am on day 8 of the first cycle and still feel extremely weak and tired. I thought I'd be feeling somewhat normal by now. I spend almost the entire day on the couch or in bed. I just can't stand for long periods at all (minutes max). My hemoglobin is 8.7, but not significantly lower than at diagnosis (9.5). At that time, I was weight training and doing aerobics each 3 times a week. Seems like most people feel better after a few days. Could something else be wrong with me? 

  • FormerMember
    FormerMember

    Dear Vella,

    On my first cycle in 2018, I lost a total of 18 pounds in 3 weeks. And I felt very bad.  I think some of us are more sensitive than others, keep you eye on your CBC and make sure you are not neutropenic -  My peak of weakness as about 3 weeks after treatment.

    So, no I do not think something is wrong with you. Ask what you dosage was for the BR.

    Wishing you well,

    Millie

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you. I was given Neulasta so my WBC is normal. I got 150mg Bendamustine on both day 1 and day 2. Rituximab was 600mg total.

  • FormerMember
    FormerMember in reply to FormerMember

    Dear

    I have NHL (mantel cell lymphoma) and my doses were 120mg benda  per day for 2 days.  What are you diagnosed with? https://www.bendekahcp.com/dosing-and-administration

    Best

    Millie

  • How long are your cycles?  Mine were originally 14 days and then changed to 21 days after cycle 3. 

    I was told to expect the worst of the side effects around days 9-12, but their definition of "worst" was different to mine - the side effect I most hated was being unable to taste food properly.

    How many cycles are you due to have?

  • FormerMember
    FormerMember in reply to FormerMember

    Either Marginal Zone Lymphoma or Waldenstrom's Macroglobulinemia.

  • FormerMember
    FormerMember

    I just got my IGM results - I had bloodwork Monday and my IGM has gone up to 8300 mg/dl. It was 4700 when I was diagnosed. That is probably a big part of why I am feeling badly.

  • Hi Vella

    I was diagnosed with WM in 2017 and had to do six cycles of bendamustine/rituximab 

    it does make you feel tired and week and generally the bendamustine can make things worse for they are better keep an eye on your temperature while going through chemo as it can be quite easy to get sepsis if this happens then contact your oncology team straight away you may loose weight I lost nearly 4 stone in the first month also food doesn't taste the same you may get aching muscles and fatigue listen to your body and if you are tired then you must rest the treatment is great for treating WM and generally achieves good results I have been in remission since 2018 and although still feel quite tired most of the time I feel a lot better than I did 

    good look with your treatment

    Regards

    Simon