rituxan treatments

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

I was diagnosed with follicular indolent around 3 months ago. Oncologist suggested "watch and wait". A week later, all involved lymph nodes started to grow. Both sides of neck and groin. Did an incisional biopsy and it was still considered follicular. Decided to start Rituxan treatments, 1 weekly for 4 weeks. After 1st. treatment, all nodes shrunk by 1/2. Was pretty happy to see that so quickly. However, just received 3rd. treatment and the nodes are starting to swell. Also noticed 2 new swollen nodes in my neck. Fourth treatment in a few days. Is it common for this growth during treatments? Has anyone had this happen? Pretty stressed! 

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    edited August 2016 #2

    Welcome, Tom.

    I've never heard of canceous nodes growing and shrinking as rapidly as what you describe.  Initially you say the doctor wanted to use Watch and Wait, which suggests that they were not changing, and a week later they were growing ? How was this determined ? Another CT, touch exam ?   Even advanced, aggressive lymphomas seldom detectably change that much, that fast.

    Then, one application of  Rituxan shrank the nodes by half ?  How was that determined ?  A touch exam is not that precise.  Are you constantly getting CTs?  The hallmark of indolent disease is that it moves slowly, and would not necessitate scans that often, which are not great for a person's health to begin with.

    Incisional biopsies are not highly accurate in typing lymphoma. What kind of biopsy was your first ?

    To directly answer your question:  Expansion of nodes after a few infusions is not preferred, but it would depend on the strain of lymmpohoma and the drugs employed.

    The specifics of your case, to my untrained, not-professional understanding, do not fit together very well. It seems something is out of wack: either the diagnosis, or the estimates regarding size changes, the med employed -- something.  Have a sit-down with your oncologist is my recommendation, or get a second opinion, both of the biopsies, and of the treatment plan.

    max

  • po18guy
    po18guy Member Posts: 1,505 Member
    #3
    Hmmm.....

    I would wonder about the pathology - as that is literally everything in the lymphoma world. It may be a higher grade than they suspect (yet still be follicular), or it may be transforming into aggressive DLBCL, or it may not be a B-Cell Lymphoma at all. Now, Rituxan normally works very well, but it wipes out all B-Lymphocytes indiscriminately. That would seem to leave you open to infection, which would then cause the symptoms that you are experiencing. 

    I would want a second opinion at this point - another hematologist at a major research center. Travel if you must. Regardless, you must have some peace of mind during all of this.

     As my hematologist puts it, it is insanity to continue with the same drug against a growing lymphoma and expect a different result. 

  • OO7
    OO7 Member Posts: 281
    edited August 2016 #4
    Yes

    This has happened to me. I am stage IV follicular and did the same treatment In 2014. I cannot say that mine went down by half immediately but I can tell you is is that after my very first treatment the lymph node in my jaw which was hard and large became more of a Jell-O like substance and seemed smaller.   An ultrasound was done and though it appeared to be smaller it actually wasn't but it was no longer hard and was very mushy.  By week three I remember being concerned because I had a node pop out of my groin area which I never saw before then the one in my breast was getting larger.

     It's as if the cancer got angry, nodes exploded then they went away.

    This was my experience and I hope will be yours too because I'm great today!

    Good Luck!!!!!

  • john1947
    john1947 Member Posts: 14
    #5
    Blood Counts

    Ask for a copy of your blood counts next time you go for therapy.  If your lymphocytes are going down this would be what to look for.  Follicular Lymphoma is a cancer of the Lymphocytes they increase as the disease progresses.  If your lymphocyte blood counts are going down the rituxan is working.

     

  • Slowery
    Slowery Member Posts: 4
    #6
    Treatment

    When I first started treatment the lumps went down almost right away, but within two weeks the symptoms re-accurred. But I just had a PET scan and the Dr. says that the cancer is 95% gone. I had stage 4 with spleen and bone marrow involvement. I start maintenance next week. The Dr. said that I have a 100% chance of re-accurrance so I pretty much expect it. He said though that it can take as long as 10 years or more to happen.

  • Unknown
    Unknown
    edited September 2016 #7
    How?

    how was your original diagnosis made? Was it based on a fine needle aspiration or an incisional biopsy? Was it determined that the clones were of one type and all CD-20 positive? It is possible to have so-called "sub clones" which are not expressing CD-20 and therefore not affected by Rituxan. This is in effect having two kinds of lymphoma at the same time. Also transformation occurs at a rate of 3-4% per year. Even though you were just diagnosed, you may have actually had lymphoma for several years and it could be transforming.

    My non medical advice is stay cool and give the treatments time to work. I have a similar diagnosis ( Stage IV with bone marrow and splenomegaly). My treatment, which seems to have been very effective, was an initial 8 weeks of Rituxan therapy (instead of 4) followed by maintenance at 8-week intervals for 32 months - 16 additional infusions. 

    Above all, the devil is in the details And medical professionals, like any other human, are not always correct. Learn about your disease and ask questions. Understand why your treatment is the best choice. As we used to say when I was a teen - "Question authority".

    Stay calm, return fire.

  • hrveylee
    hrveylee Member Posts: 3
    #8
    Nodes shrinking

    I noticed that my nodes shrunk within 10 days of treatment, retuxan and bendamustine. I was amazed as well. I have indolent CLL. Everyone of us is different. Curremtly I'm dealing with some hives and itching, my doctor feels its the bendamustine; fairly common side efferct. 

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