Because CT scanning is the only way to follow what is happening in lymphoma, oncologists assume that it should be done in CLL. Nothing could be further from the truth. In the issue of Blood of February 10th a paper from the German group looked at the value of CT scanning in a dataset that included the CLL4, CLL5 and CLL8 phase 3 clinical trials. This included 1372 patients. In these trials progression was an end point. There were 481 events that were counted as progressive disease. Of these 372 (77%) were picked up by the blood count or by symptoms and physical examination. CT scan picked up 44 progressions (9%) and ultrasound 29 cases (6%). A decision to retreat the patient was made on the basis of CT scan on only 2 patients out of 176. CT scanning had an impact on the prognosis of patients in CR after chemotherapy but not after immunochemotherapy.
They conclude that the methods used for staging and follow-up of patients with CLL should be blood counts and clinical history and examination, as recommended in the IWCLL Guidelines. There are specific clinical situations where CT scanning might be useful. These include when treatment with alemtuzumab is contemplated; glands >5cm in diameter predict a poor response. Another reason might be when FISH shows an 11q deletion, especially in younger patients and yet another indication would be in preparation for a stem cell allograft.
If one's only presentation is deep, un-palpable abdominal nodes, CT and ultra-sound are the only options. In my case (trisomy 12, IgVH=mutated), the nodes grew to 15 cm in size and started to press on the liver which caused an immediate panic when accidentally detected by CT. My only symptom was a full feeling after consuming only a small meal. After having 4 cycles of PCR, I now get a CT every 6 months. Studies like this are useful in setting guidelines not fixed rules.
ReplyDeleteRegards, TomD
Of course, if symptoms suggest it CT is indicated. What is wrong - mainly because of the X-ray dose required - is to routinely scan all cases of CLL, the way that patients with lymphoma are scanned.
ReplyDeleteCould you say how often someone with 11q might need to have a CT. I have had 10cm abdominal nodes. after treatment got them down but I would rather not have CT, would ultrasound be effective in this type case. My bone marrow has also been hit pretty hard. I am getting ready to do one day of R after having it 3 months ago along with 2 day of B and one R. my neutrophils have remained low around 0.30 t0 0.50 Thanks for helping so many of us sort through issues like this. Connie
ReplyDeleteUltrasound will certainly detect abdominal node and give some idea of size, though it is not as objective as CT. How often? It depends on the individual case. make your concern about X0ray dose known to your oncologist. I have already had 6 CT scans to monitor my disease, but there is no other way.
ReplyDeleteTerry,
ReplyDeleteHow would you assess the need for determining internal node size and location prior to a patient's undergoing TX with Lenalidomide which is known to produce tumor fare?
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The tumor flare with Revlimid is predictable and is probably due to infiltrating lymphocytes reacting against the CLL. I'm not sure why a CT scan would be necessary to document it as it is transitory and would be evident in the palpable nodes.
ReplyDeleteI apologize for being a bit of a dunce in my understanding of your answer to my question but am I right to interpret "predictable" as always happens rather than a particular clinical sign?
ReplyDeleteSecondly, if we can use TomD's comment/situation as an example, are you saying that a node as Tom has described would not pose an additional threat to his liver during a Revlimid tumor flare due to the transient nature of the flare and or the internal cavity would always accommodate a flare posing no additional threat to his liver?
As one who has fended off CT scanning by general oncologists in regard to my kidneys it would be a great relief to assess the threat of internal node flare if I opt for Revlimid.
Much thanks and may you keep good quality of life Birthdays coming.
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The tumor flare is limited and transient. Although scary at the time i'm not convinced that it requires a prophylactic CT. AS TomD says studies like this are guidelines, not commandments.
ReplyDeleteThe liver is not really vulnerable to lymph nodes enlarging in the abdominal cavity. One can envisage nodes pressing on the bile duct outside the liver leading to obstructive jaundice, but I doubt that a CT scan would be needed to diagnose that. At least, I come from an era when we could easily diagnose it without a CT scan because they hadn't been invented.
What are the chances that one can get a complete remission by chlorambucil. Doctor has advice him this medicine for 6 month(he has to take medicine for first 10 days of every month and there is a gap of 20 days after that).after three months of taking the medicine his blood counts are perfectly normal. So can I take it as a good improvement?
ReplyDeleteCRs are rare in CLL with chlorambucil, probably less than 10%, but nevertheless good PRs are often longlasting and chlorambucil does so little damage to normal tissue that it can often be successfully repeated.
ReplyDeleteThanks for you comment. Can you please tell me what is the average PR with chlorambucil ?
ReplyDeleteWith that dose about 70%
ReplyDeleteTerry,
ReplyDeleteI have convinced my oncologists to switch to the latest generation MR imaging to follow my abdominal nodes in my 11q del CLL.
There is a also apparently some newer lower dose CT scans that the radiologists say are less precise, but might fill the need where one only needs to follow a trend and not a precise nodal measurement
Be well
Brian
And then there are the trials that demand a CT Scan every 3 months. Tom is on the btk inhibitor trial at MD Anderson and has had 4 Scans since last October. I think it is too much but the protocol demands it. Btk has helped Tom more than Revlimid, Rituximab or steroid treatment. It is far better than FCR because the side effects are so few. This trial has had a more profound effect on Tom's CLL than his other multiple treatments and he is relapsed and refractory.
ReplyDeleteSo, I guess we will take the every 3 month CT Scanning.
Jenny Lou Park