Hi, we are coming up on two years since my husband finished a 6 month treatment with fcr. We had been told he had a "complete response with incomplete recovery of the bone marrow." His blood counts improve some then dwindle some; currently neutropenic again barely above 500.
His onco has been insisting on two month visits (he does receive IVIG treatment every two months). Now wants to do a CT scan at the next two month visit to look for large nodes internally that would not be palpable (he did have a large mass near his spleen before treatment).
ALC is within normal limits and he does well except for recurring lung trouble/cough and some fatigue.
We are both unhappy about the prospect of another CT. The onco is highly trained and has lots of experience with CLL although he is not a CLL specialist.
Would bulky nodes in and of themselves be a reason for further treatment?
Written by
dwolden
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None on a CLL forum can definitively advise you on a decision as to getting a CT scan. The thing to remember, it is the patient's right and duty to ask how a CT scan, ordered in any circumstance, will help guide the oncologist to deliver better care. In your husband's case the degree of effectiveness of the treatment on the large mass appears to be the concern of the oncologist. Ask the oncologist what the plan is if the large mass is not reduced to whatever is considered a non pathological size. If indeed the node mass is not at or below normal size, will further treatment be recommended? Ask if an enlarged node alone will be enough to trigger further treatment or if it would be tied to the appearance of B symptoms or a rise in lymphocytosis. This way you will have an idea of how Important a CT scan will be in the decision to retreat. In the context of W&W, enlarged nodes, without B symptoms or lymphocyte doubling time criteria, are not generally a reason to begin therapy. After a regimen of therapy the goal is to get as deep a remission as possible so one strategy is to continue therapy to drive the cancer into a deeper remission. The toxicity of the resumed therapy must be balanced against any assumed benefit. In the case of FCR you might ask how long the therapy is expected to act against the CLL because Rituximab is known to have a long half life and its benefit to work against tumor burden may continue over time. If the Onc in question is not going to act on an enlarged node but is just looking out of curiosity, I would question the utility of getting scanned. The degree to which your husband's CLL is aggressive or indolent may ad varying weight to the value of any post treatment CT scan. If you do not know then ask how his CLL is defined.
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Follow up to static dilemma 
Ibrutinib /Venetoclax Follow up 
9 month check up post FCR and it seems it was worth the ride! 
CT thorax results: borderline lymphs
Treatment necessary? 
