More enlarged Lympnodes

DTDG
DTDG Member Posts: 12

My husband is fighting non hodgkins DLBCL stage 4 since August 2016.  He has had 8 cycles of R-EPOCH (Every 21 days for 5 days).  After the first 6 cycles of chemo, the first PET scan showed that the chemo was working. the lympnodes went from 10cm to 2cm.  He did the last 2 cycles, had a PET scan and now it is showing large lympnodes again just in the abdomen area.  We will have another biopsy to see if it is the lymphoma or another kind of cancer. He Has not yet been in remission. Has this ever happen to anyone and what was the outcome and treatment?

Comments

  • Jeff148
    Jeff148 Member Posts: 184
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    I had two spots light up after finishing chemo. They went back in and took a biopsy. It turned out to be scar tissue from where they took the first biopsy from. Scar tissue can give a false positive. I hope you have a similar result!!

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

    DTDG,

    As your husband's nodes shrank he was in what is termed PR, or partial remission. If they had disappeared from PET scans, it would have been CR, or complete remission. CR is also known as NED, or no evidence of disease.  He may be a candidate for SCT (stem cell transplantation) later, but I imagine that is still speculative at this point.

    Inability to achieve CR is not uncommon -- many, many writers here have experienced it.  Most likely his drugs will be changed before long, and the battle will continue.  Of course only a biopsy will determine what the newly-enlarged nodes are, and whether they are lymphma or not. 

    Re-biopsy is very necessary, because lymphoma tends to morph into other strains over time in many cases. What they began treating he may no longer have, requiring treatment shifts in most cases.

    max

  • DTDG
    DTDG Member Posts: 12
    Thanks so much for the responses

    Thanks so much for the responses.  Its just so hard waiting.

  • po18guy
    po18guy Member Posts: 1,499 Member
    edited March 2017 #5
    Hoping for the best

    My second relapse brought a mutation into the picture, meaning that I was fighting two different T-Cell Lymphomas. Based on scan results, it seemd that only one would respond to therapy, and I failed a long-term drug I had been on (Romidepsin), a clinical trial and two single-agent regimens, with all PET-CT reports stating "progression." At that point, a new combination of existing drugs, tested in recent clinical trials, did the trick. That regimen is known as TREC and it consists of Treanda (Bendamustine), Rituxan, Etoposide and Carboplatin. Since Rituxan is not effective against T-Cell Lymphomas, it was omitted from the regimen and I received only Benadamustine, Etoposide and Carboplatin.

    Nevertheless, it erased 24 tumors and small intestine lymphoma involvement in only two infusions. I went on to have a third infusion and then to conditioning chemo for an allogeneic stem-cell transplant. TREC is certainly worth asking about as is Arzerra (Ofatumumab), a drug in the same class as Rituxan, but considerably more potent. It would have to be used "off-label" at this time, but that can be done.